What's New in Pulmonary Hypertension January 2010 - April 2012

RSS Location Change -- Introducing the PHA Daily Beat: News for your Health and Heart

Thu, 12 Apr 2012 18:55:00 GMT

We’ve moved! This What’s New in PH feed has moved to a new location and gotten a whole new look, including a new name! Check out the PHA Daily Beat: News for your Health and Heart.

If you subscribe via RSS you must switch the URL of your feed to http://feeds.feedburner.com/PHADailyBeat. You can also now subscribe via email to our daily updates.

Visit the PHA Daily Beat

New Information About PAH Induced by Use of Dasatinib

Wed, 11 Apr 2012 19:45:00 GMT

Research published in the Leukemia Research Journal shares new information about pulmonary arterial hypertension (PAH) induced by the use of dasatinib, with symptoms reversing once the drug is stopped. Read more

Traveling with Your PH Child

Wed, 11 Apr 2012 19:36:00 GMT

Whether by plane, car, bus or train, traveling with pulmonary hypertension can be tricky for families. This webinar recording will give you the tips you need for a planning smooth vacations - whether it’s across the country or around town!

One father who attended the webinar thanked the presenters, Michelle Calderbank, RN, BSN, and Jennifer Wisniewski, RN, BSN, of Children's Hospital Colorado:

"It's like you are reading my mind. My daughter was diagnosed at 2 and is 11 now ... Ever since she was diagnosed, my dream has been for her to see her grandmother in Mexico ... she's never seen her. But I didn't even want to ask about traveling to Mexico."

Watch the Traveling with My PH Child recording in PHA Classroom

Early-Stage Lung Cancer Treatments Evaluated in Patients With Breathing Problems

Wed, 11 Apr 2012 16:09:00 GMT

4/10/2012 (Medical Xpress) - Many patients with early-stage lung cancer have emphysema, pulmonary hypertension or other breathing problems that limit their treatment options. The study focuses on patients with the most common type of lung cancer, non-small cell lung cancer. When it is diagnosed early, the standard treatment is surgery. But the operation is especially risky for patients with poor lung function, who often have complications after surgery. Read article

First Ever Indonesian Pulmonary Hypertension Meeting Held

Tue, 10 Apr 2012 21:26:00 GMT

PHA is pleased to share with you a photo from the first-ever pulmonary hypertension patient meeting in Indonesia! This meeting is the first step in establishing regular meetings for PH patients in Indonesia. This is a milestone meeting for Indonesia, a country with a population of 200 million and just one treatment. We first heard from the mother of Enzo, a little boy living with PH (pictured in the middle, holding a magnet).

Visit the Indonesian PH Group Facebook page

Brooke Gunter Raises Over $5,000 by Sharing Her Brother's Story

Tue, 10 Apr 2012 21:08:00 GMT

Brooke Gunter created a personal fundraising page in honor of her 18-year-old brother Jake who has pulmonary hypertension. Here is an excerpt of her story.

Jake loves to make people laugh. He is undoubtedly one of the funniest guys I know, and I guarantee most of the people that know him would agree with me. Jake is smart, in that natural, witty kind of way that everyone always wishes they could be. Jake dreams big, he has plans for himself that most would consider impossible given his condition. He is loyal and kind. Most importantly, my little brother is brave. In the two years since his diagnosis I have never heard him complain, not even once. I know Jake struggles with his disease every day, but he chooses to suffer in silence. Life has dealt him a less than ideal hand, yet he continues to joke his way through the pain; pity is unacceptable to him. This disease prohibits Jake from doing the things that any 20 year old should rightfully be able to do, from living the life that he deserves.

I created this page because I wanted to tell all of you a little bit more about this kid that I have had the privelege of getting to know for the last 20 years. I want him to know how I see him, and hopefully, through your donations and comments, he will be able to see how highly all of you think of him, as well. I want him to have no doubt that his life is worth fighting for.

Pulmonary hypertension afflicts 15 in every 1 million people. Unfortunately, Jake is one of them. There is currently NO CURE for pulmonary hypertension, and the prognosis is less than favorable. I refuse to let this disease dictate and limit my brother's life, his dreams, his humor. I originally set my fundraising goal at $1,000, but then I thought that Jake would find such a modest attempt simply unnacceptable. He'd want us to dream bigger. I know that with all of your support we can reach my new goal of $5,000. It may not buy him a new pair of lungs, but it can buy us hope.

Brooke exceeded her goal of raising $5,000. To date she has raised $5,581. Read more on Brooke's personal fundraising page

Interested in doing your own personal fundraising page? Get started

Say Thanks!

Mon, 09 Apr 2012 21:38:00 GMT

PH touches the lives of many people – patients, family members, friends and dedicated medical professionals. You can acknowledge or remember the people who have touched your life with a Note of Thanks and Remembrance in the program book for PHA’s 10th International PH Conference for $25. All proceeds go toward the Conference Scholarship Fund. Notes are due May 1.

Write your thank you note today

Conference Registration Early-Bird Discount Ends Monday

Thu, 05 Apr 2012 20:50:00 GMT

PHA’s 10th International PH Conference and Scientific Sessions
June 22-24, 2012
Renaissance Orlando at SeaWorld®
Orlando, Florida, U.S.A.

More than 500 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions, The Power of One: From a Kitchen Table to Around the World. We hope you will join them! If you haven’t registered yet, you can still take advantage of the early-bird discount of $25/person through Monday, April 9. Don’t miss out on this opportunity!

For questions about registration, please contact Registration@PHAssociation.org or 301-565-3004 x768.

Please note that the early-bird discount rate will not be extended past Monday, April 9.

PHA Leadership Working Together

Thu, 05 Apr 2012 20:43:00 GMT

PHA's leadership -- the Board of Trustees, Scientific Leadership Council, and PH Professional Network Executive Committee -- met recently. PHA's President, Rino Aldrighetti, used these meetings to paint a picture of how patients, caregivers and medical professionals work together to help shape the direction of PHA. Read more on Rino's blog

Scleroderma Foundation Launches Unique Video Campaign Today

Thu, 05 Apr 2012 12:53:00 GMT

4/4/2012 (MarketWatch) - WALKFORCURE.ORG is a video sharing website featuring a wall of scleroderma supporters sharing their reasons for taking part in Stepping Out to Cure Scleroderma walks and raising awareness for scleroderma in general. Supporters are asked to upload an original video and describe why they walk. Read article

PHers Shower the Community with Media Successes

Wed, 04 Apr 2012 20:47:00 GMT

Thanks to the work of some very active PH awareness raisers, pulmonary hypertension has been the subject of multiple news articles around the country. Here are just a few of the media successes from the last few weeks. Each one illustrates the various ways you can share your story with reporters to raise PH awareness in your community: Joy Morgan worked with her PH doctor to educate medical professionals in a local medical magazine, Pat Harrington shared her story and urged her community to attend her PH fundraiser, and Deb Watkins piggy-backed her awareness raising efforts onto a larger story about Portland’s St. Patrick’s Day fun run. Read more about these media successes in PHANews

CuraScript and Accredo Parent Companies to Merge

Wed, 04 Apr 2012 20:40:00 GMT

(The Commercial Appeal) Express Scripts has completed a $29.1 billion takeover of Medco Health Solutions. Express Scripts is the parent company for CuraScript specialty pharmacies and Medco for Accredo. For the moment you should expect to get your pulmonary hypertension medications from the specialty pharmacy you do now, but in the future expect to hear more information as the two companies merge. Read article

10-Year-Old UCLA Patient Lends Voice to Raise Awareness Of 'Adult' Lung Disease That Affects Kids Too

Tue, 03 Apr 2012 13:19:00 GMT

4/2/2012 (UCLA Health) - Lucas, an up-and-coming voice-over actor who has voiced radio commercials and an animated television pilot, has narrated a 30 second public service announcement to help educate the public about how the disease affects kids. The Burbank fourth grader wants people to know that there is a huge gap in research that focuses on younger patients like him. "I want to find a cure for pulmonary hypertension. I hope my commercial helps do that," Lucas said. "It's important to me that doctors find a cure for PH so they can save thousands of lives." Read article | Watch the Video

Participate in World Pulmonary Hypertension Day: May 5, 2012

Fri, 30 Mar 2012 18:29:00 GMT

The Asociación Nacional de Hipertensión Pulmonar (ANHP) has created the First World Pulmonary Hypertension Day to raise pulmonary hypertension awareness on a global scale. This event will consist of a Scientific Symposium on May 4, 2012, in Madrid, Spain, followed by the main World PH Day events, a cocktail gala and the ANHP General Assembly on May 5.

To date, World PH Day has been supported by a number of PH and related health organizations worldwide, including: PHA, PHA Europe, Sociedad Latina de HP, PHA Slovakia, PHA Japan, PHA Canada, PHA South Africa, SAPH (Saudi Arabia), PH Israel, PHA Norway, PHA Sweden, PHA Poland, FUNDAVHIP (Venezuela), PHA Hungary, PHA Latvia, EURORDIS, NORD, Federación Española de Enfermedades Raras, European Lung Foundation, American Thoracic Society, Scleroderma Foundation, Sociedad Española de Cardiología, Sociedad de Ruematología and European Respiratory Society.

Leading up to the event, PHA will be asking members of the PH community to change their Facebook status to show support and solidarity on May 5. To learn more about the event, visit the World PH Day website.

Know Your PH: Free Interactive iPad Book

Fri, 30 Mar 2012 18:22:00 GMT

Know Your PH is an interactive multi-touch iPad book now available for free download on iTunes. Written by Drs. Michael Parker and David Roberts, Know Your PH is a dedicated source of vital information for pulmonary hypertension patients, as well as for families and friends of those who are facing PH. The goal of this book is to give you accessible, relevant information that will help you understand the diagnosis, evaluation, and treatment of PH. Knowing that PH can be a complex and at times frightening condition, the book is organized around patients' most frequently asked questions. To guide you in better visualizing the underlying mechanisms (pathophysiology) of related medical problems and symptoms, Know Your PH offers a series of interactive, animated diagrams. Also embedded in this resource are videos and audio clips that clarify key concepts and highlight important information.

Download the free interactive Know Your PH iPad book

Kim Ford & Conchita Watson Lead Another Successful Silver Spring Support Group Meeting

Thu, 29 Mar 2012 19:42:00 GMT

The local Silver Spring, Md., PH support group met recently in PHA's offices. The 20 PHers in attendance were treated to a talk by Jaclyn Brubeck, RN, BSN, about diagnosis and treatment of PAH, and they learned about programs and services for patients and caregivers from PHA staff. The group is geared up to educate their Members of Congress on PHA's National Call-In Day on April 26.

Live in the D.C. metro area? You can meet other PHers like group leaders Kim Ford and Conchita Watson (pictured right). Visit the Silver Spring support group website to learn more

Researchers Identify Pathway as New Target for Scleroderma Therapy

Thu, 29 Mar 2012 18:48:00 GMT

(News-Medical.net) A genetic pathway previously known for its role in embryonic development and cancer has been identified as a target for systemic sclerosis, or scleroderma, therapy. The finding, discovered by a cross-disciplinary team led by John Varga, MD, John and Nancy Hughes Distinguished Professor of Rheumatology at Northwestern University Feinberg School of Medicine, was recently published in the journal Arthritis & Rheumatism. Read more

Get Your PH Banner for Facebook Timeline

Wed, 28 Mar 2012 22:17:00 GMT

If you are on Facebook and you haven't already moved to the new timeline layout, you will be forced to as of this Friday, March 30. At the top of your page will be a space to have a large banner image called a "cover." We have created a number of cover images for you to use to spread pulmonary hypertension awareness in our PHA Facebook Banners photo album. You can choose from five options.

Editor's favorite:

View and download PHA Facebook Banners for your Facebook timeline cover

Importance of Having a Pulmonary Hypertension Friend (or PHriend)

Wed, 28 Mar 2012 22:12:00 GMT

Kiara Tatum recently wrote on the Generation Hope blog about the importance of having a PHriend who can understand what you are going through with your pulmonary hypertension and how it affects your life. Read Kiara's blog post

Lower Dose of Thrombolytics can Treat Moderate Pulmonary Embolism

Wed, 28 Mar 2012 14:15:00 GMT

(News-Medical) - Pulmonary embolism is estimated to cause over 100,000 deaths each year in the U.S. Although thrombolytics, or "clot-buster" drugs, are currently reserved to treat only the most severe cases of pulmonary embolism, new data suggest that when used at lower doses, these drugs are also safe and effective for more common, moderate cases of pulmonary embolism, according to research presented today at the American College of Cardiology's 61st Annual Scientific Session. Read article

Giving Pulmonary Hypertension a Voice on Rare Disease Day

Tue, 27 Mar 2012 18:37:00 GMT

February 29 was Rare Disease Day – a global effort to raise awareness of rare diseases and the need for more research and treatments. PHers joined in the effort by hosting awareness tables, spreading the word on Facebook and even speaking out on Capitol Hill. PH community members and PHA staff represented the PH community at a variety of events in Washington, D.C.

Read the highlights about Rare Disease Day activities in the PH community

Vanity License Plate Raises Awareness for Pulmonary Hypertension and Organ Donation

Tue, 27 Mar 2012 18:30:00 GMT

Lisa Garnett, whose daughter has pulmonary hypertension, is using her license plate to raise awareness for organ donation and pulmonary hypertension. She purchased a Donate Life plate and "CUREPH" as her plate number. Check it out below!

Website Discoveries: "Empowered by Hope: Understanding PH" Video

Fri, 23 Mar 2012 17:10:00 GMT

Things I Found on PHA's Website
by Kathryn Frix

I have found a great way for you to help people in your life understand pulmonary hypertension. It was over a dozen years ago, but it is still clear in my mind how I replied when my cousin told me he finally had a diagnosis for his distressing symptoms - pulmonary hypertension. I asked, "What is pulmonary hypertension?"

Spur a Cure for PH in Pheonix this Saturday

Fri, 23 Mar 2012 17:04:00 GMT

The organizers of this Saturday's Spur a Cure for PH country-western themed event in Pheonix were in their local paper raising awareness for pulmonary hypertension and promoting their special event. Read the article | Visit the Spur a Cure for PH website

Link Found Between Migraines and Heart Condition

Fri, 23 Mar 2012 13:46:00 GMT

3/20/2012 (News 4 Jax) - New research shows a link between people who get migraines and the common congenital heart condition atrial septal defect, or ASD. "Those patients have been found to not only have a higher incidence of this hole, but actually in having the problems associated with the hole...whether is be a stroke, pulmonary hypertension, arrhythmias, shortness of breath," Splaver said. Read article

What's in Store for Families of PH Kids at Conference

Wed, 21 Mar 2012 20:10:00 GMT

“I will be taking my family to Orlando... There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.” – Christina Doak, Spring 2012 Pathlight (pictured below with family in 2006)

If a young person in your family has PH, we hope you’ll be joining Christina and her family at PHA’s International PH Conference. The Conference may be your only opportunity to meet other families like yours. PHA worked closely with our Parents Advisory Board to identify the best ways to maximize this opportunity for families of PH kids.

NIH Launches New Genetic Testing Registry

Wed, 21 Mar 2012 20:05:00 GMT

The Genetic Testing Registry (GTR) provides a central location for voluntary submission of genetic test information by providers. The scope includes the test's purpose, methodology, validity, evidence of the test's usefulness, and laboratory contacts and credentials. The overarching goal of the GTR is to advance the public health and research into the genetic basis of health and disease. Visit the NIH Genetic Testing Registry website

No PH Support Group in Town? Pick Up the Phone!

Tue, 20 Mar 2012 18:45:00 GMT

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away with PHA’s monthly Patient Telephone Support Group. It always helps to have someone else to talk to, someone who understands what it’s like having pulmonary hypertension. Our patient telephone support group makes it easier to participate in support groups regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group

When: Thursday, March 22, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

For assistance: Debbie, 301-565-3004 x755

Whittier Woman Receives Miracle and Gives Back

Tue, 20 Mar 2012 16:17:00 GMT

3/14/2012 (Whittier Daily News) - Fifteen years after only being given five years to live, Whittier's Monica Penaranda, 32, who was diagnosed with pulmonary hypertension, is now giving back. She went to the first Pulmonary Hypertension Walk 11 years ago where family members pushed her in a wheelchair. "I was able to physically finish my first walk in November 2011 at Stanford University," Penaranda said. Penaranda had a vasodilator implanted in her stomach a month ago. The pump gives her medication that dilates vessels in her heart and lungs. Read article

Scleroderma Won’t Get Best of Coloradan

Tue, 20 Mar 2012 16:16:00 GMT

3/15/2012 (Our colorado News) - Ray Woolf spent 30 years of his life not knowing what was wrong with him. Finally, four years ago, at age 47, he was diagnosed with a rare form of a rare auto-immune disease known as linear scleroderma. Read article

UF Researchers Target 'Traitor Proteins'

Tue, 20 Mar 2012 16:14:00 GMT

3/15/2012 (Suncoast News) - After conducting what they say is a first-of-its-kind inventory, researchers at the University of Florida have concluded that roughly one American out of 10 has "traitor proteins" thought to cause lupus, scleroderma or other autoimmune disorders in their blood. Read article

Caregiver Webinar: Recognizing and Coping with Depression

Fri, 16 Mar 2012 20:28:00 GMT

Wednesday, March 21, 1:30 p.m. ET/10:30 a.m. PT

How do you know when you or someone you love is feeling blue versus feeling depressed? This webinar will focus on recognizing the signs of depression, as well as providing strategies for coping with depression, sadness and stress.

Learn more and register

PH Treatments Update!

Thu, 15 Mar 2012 19:03:00 GMT

PH Treatments: What’s On the Horizon
Friday, March 23, 2:00 p.m. ET
Webinar (Phone AND Internet)

It is an exciting time for PAH research. Over the past 13 years, many PAH therapies have been approved by the FDA! In this webinar, listen as Dr. Michael McGoon, Mayo Clinic, discusses the new treatments available and treatments currently in the pipeline.

Toddler Gets "Four-Legged Lifeline"

Wed, 14 Mar 2012 16:23:00 GMT

3/11/2012 (MyFoxAtlanta) - It is a big burden for a Loganville toddler to drag an oxygen tank around just to be able to breathe, but now that 3-year-old girl is getting some help from what her parents call a "four-legged lifeline." Read article and watch the news video

Dr. Zannos Grekkos Under Criminal Investigation for Stem Cell Therapy

Tue, 13 Mar 2012 21:59:00 GMT

(3/8/12) The Florida Surgeon General has issued an emergency suspension of the license of Dr. Zannos Grekos for providing a stem cell treatment to a patient contrary to previous restrictions placed on his license. The patient died during the treatment. Read news coverage: CNN | NBC 2 | Marco Eagle

PHA’s Scientific Leadership Council has offered guidance on stem cell treatments for this point in their scientific development. Read PHA's Scientific Leadership Council Statement and Fact Sheet on Stem Cell Therapy and Pumonary Hypertension

Playing the Waiting Game - Congenital Diaphragmatic Hernia

Tue, 13 Mar 2012 14:19:00 GMT

3/10/2012 (WNDU) - Most babies have less than a 50% chance of surviving a condition that’s diagnosed before they’re even born, but now delaying necessary surgery to treat the problem is greatly improving the odds. Robby had a congenital diaphragmatic hernia, a hole in the diaphragm causing the organs to crowd up into the chest, so the lungs can’t develop. Read article & watch news video

Chinese Cultural Center Puckers Up for PH

Mon, 12 Mar 2012 20:35:00 GMT

The ISEEK PH Cultural Center in China organized an awareness day around the blue lips campaign. Ziye Li, Executive Director of ISEEK, reports on the event:

We organized a public-interest activity regarding “puckerup4ph” on Mar. 4, which was the first public promotion in China for PH. It was really effective. Mr. Chen Jingyu, a lung transplant expert as well as deputy to National People’s Congress, and Ms. Yong Mei, a famous Chinese actress, attended our event to popularize common knowledge about PH and blue lips among the masses. So many people were attracted by us and enthusiastically joined in.

Visit the ISEEK website (Chinese)

Pediatric Webinar Series: Traveling with My PH Child

Mon, 12 Mar 2012 20:33:00 GMT

Thursday, March 15, 8:30 p.m. ET/5:30 p.m. PT

Whether by plane, car, bus or train, traveling with PH can be tricky for families. This webinar will provide you the tips you need for planning smooth vacations, whether it’s across the country or around town!

New Web Section Just for Teens!

Fri, 09 Mar 2012 20:30:00 GMT

PHA has just launched a brand new section of its website especially for teens with PH. Check it out!

Visit the PH Teens section

Proud Peacocks: Gala Raises Funds and Awareness for Pulmonary Hypertension

Thu, 08 Mar 2012 21:57:00 GMT

On Saturday, February 18, the Tobias family hosted a peacock-themed gala in honor of their daughter, Katie (pictured center), who was diagnosed with pulmonary hypertension in 2006. Over 170 guests gathered to dance, eat, and show their support for pulmonary hypertension research and programming.

Katie, who turned 25 last month, is a writer and artist. One of her original pieces of artwork was raffled off during the event. Check out some of Katie's artwork on her Journeys page.

New Brochure Provides Life-Saving Information for EMTs

Wed, 07 Mar 2012 21:53:00 GMT

Nobody wants a medical emergency, but just in case, there’s a new brochure you can give to Emergency Medical Technicians (EMTs). PHA’s new Emergency Medical Services Brochure explains how to best provide emergency care for you. Just fill in the blanks with your personal pulmonary hypertension treatment information.

Order a free copy

Share this Dynamic Message about Kids and PH

Tue, 06 Mar 2012 20:28:00 GMT

We thought you’d like to see this 30 second video on pulmonary hypertension research for children. The video was developed by PH parent Steve Van Wormer and his son who has PH, fourth grader Lucas, does the voice over. If you like it, please pass it on to help us get the word out.

You can share the YouTube video (http://youtu.be/P2JVe1XhGTw) on your Facebook page or through Twitter, and you can get an email sent to you that you can forward to your friends and family on our website at www.PHAssociation.org/PediatricResearchEmail. Also, the link at the end of the video will give you a lot more information on the importance of PH research and building a medical structure to treat kids.

Watch the video!

'Breathtaking' Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day

Fri, 02 Mar 2012 15:31:00 GMT

2/29/2012 - (MarketWatch) - In the news release, "'Breathtaking' Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day" issued on 28 Feb 2012 23:01 GMT, by Pulmonary Hypertension Association Europe and Bayer HealthCare over PR Newswire, we are advised by a representative of the company that a new link fits into the following passage of text: "Footage of the 'Breathtaking' campaign events will be available at the following link at 17.30 CET on 29th February. http://bit.ly/z1Yn3R". Read article

Keep Up with Life, Pulmonary Hypertension and All

Thu, 01 Mar 2012 20:23:00 GMT

“For me, living with PH means I’m always planning, always looking for the easiest way to get things done, from simple things like picking up laundry or cleaning the kitchen, to putting on special events at work or planning a vacation.” – Val, PH patient

Just because you have pulmonary hypertension doesn’t mean you need to give up doing what you love. PHA has assembled some of the best ideas from Val and others living with PH in the newly updated Day-to-Day Living section. With tips on everything from home improvements to staying active when you’re low on energy, you’re bound to learn something new.

For example, just because you don't have the energy to keep up with your hobbies like you used to doesn't mean you need to give them up entirely. If you have a green thumb but you can't keep up with your large garden, scale back. Plant a smaller garden or install window boxes.

Find more day-to-day living with pulmonary hypertension tips

Pulmonary Hypertension Glossary Now Online

Wed, 29 Feb 2012 21:56:00 GMT

PHA's Glossary of Pulmonary Hypertension Terms from Pulmonary Hypertension: A Patient's Survival Guide (4th ed) is now available online! It includes definitions of common PH terms as well as links to additional resources.

View Glossary of PH Terms | Order a Survival Guide

PH Research and Education Act Gets a Wave of Congressional Support

Tue, 28 Feb 2012 19:32:00 GMT

Thanks to the hard work of several PH advocates, the following Members of Congress became official co-sponsors of the Tom Lantos PH Research and Education Act last month:

Rep. Elijah Cummings (MD-7)
Rep. Steven LaTourette (OH-14)
Rep. Todd Platts (PA-19)
Rep. David Price (NC-4)
Rep. Tim Ryan (OH-17)
Rep. Louise Slaughter (NY-28)

The following have expressed interest in co-sponsoring and are waiting for their names to be added to the bill:

Rep. Jason Altmire (PA-4)
Rep. Jesse Jackson Jr. (IL-2)
Rep. Gregory Meeks (NY-6)
Rep Michael Michaud (ME-2)
Rep. Chris Murphy (CT-5)

Each of these representatives took action because advocates shared their PH experience and requested co-sponsorship of a bill that will improve their lives. According to Sara Mabry, the Legislative Aide to Sen. Robert Casey (D-PA), sometimes the easiest way to get a Member of Congress to co-sponsor the PH Research and Education Act is to simply ask them to do so: “There are literally tens of thousands of bills introduced each Congress. The easiest way to figure out which ones we need to pay attention to is by looking at the mail we’re getting and the requests constituents make. If someone took the time to write or visit about a bill, then that means it’s important to them,” says Sara.

The PH Research and Education Act is the only bill in Congress that is solely focused on improving the lives of PH patients. The bill would increase PH education and awareness for the public and medical professionals, and also encourage collaboration among PH researchers working to create the newest PH treatments and, one day, a cure.

Have you asked your Member of Congress to co-sponsor? Send your Members of Congress an email urging them to co-sponsor the Tom Lantos PH Research and Education Act. Get started today!

Then, contact Elisabeth Williams at 301-565-3004 x753 or Advocacy@PHAssociation.org

State of PHA Address Available to Watch

Tue, 28 Feb 2012 19:24:00 GMT

A recording of the recent webinar “State of PHA – An Annual Update from PHA President Rino Aldrighetti” is now available in PHA Classroom. This webinar discusses the current state of PHA, the growth of the PH community and PHA’s recent accomplishments and goals for the new year.

Watch State of PHA recording

Support Group Presents Proclamation to Univ. of Minn. Medical Team

Mon, 27 Feb 2012 22:55:00 GMT

The Minnesota Twin Cities PH Support Group successfully obtained a proclamation from Governor Mark Dayton declaring November Pulmonary Hypertension Awareness Month. Recently, the group presented the proclamation to the medical team at the University of Minnesota (pictured below) in memory of Mallory Brooke Hicks, one of their patients. Read below what Lois Piper, Mallory’s mother, had to say about the occasion.

I just wanted to share with you that we presented a beautifully framed proclamation from Governor Mark Dayton declaring November as PH Awareness Month in Minnesota to Dr. Marc Pritzker and Dr. Monica Colvin-Adams, and the entire PH team at the University of Minnesota Hospital today. We made the presentation in memory of Mallory Brooke Hicks, who was diagnosed in September of 2010 with PH and lost her battle a few, brief months later. Under the care of Dr. Pritzker and the entire PH team, Mallory was treated with kindness, respect, and dignity. Because of the outstanding care she received, she was able to face PH with grace and gumption in the small number of months she had in her battle.

It is to the credit of the care of her physicians, and the support of the Pulmonary Hypertension Association that saw her through diagnosis and treatment. It is in her memory and her steadfast commitment to understanding PH, her desire to raise awareness and early detection of the disease within the medical community, and finding a cure that we as part of the PHA community presented this proclamation.

The proclamation was presented by Brandon Hicks, Mallory's 7-year-old son, and will hang in prominence, giving hope to all newly diagnosed patients at the clinic.

It was a great experience and a good day to advance the cause of awareness raising.

Lois Piper

Living With Pulmonary Arterial Hypertension

Mon, 27 Feb 2012 13:35:00 GMT

2/25/2012 (The Ledger) - Increasing tiredness and passing out without apparent cause sent Joy Morgan and Ken Hintz looking for answers. Now they live on multiple expensive medications taken around the clock. Each has much less energy than their healthy outward appearances suggest, which can bring stares or worse when they park in handicapped slots. They have pulmonary arterial hypertension. Read article

Let’s break PHA’s Fun Walk Record

Fri, 24 Feb 2012 19:21:00 GMT

Did you know we had 18 different volunteer-organized fun walks or fun runs in 2011? Will 2012 be a record-breaking year for the PH community? Let’s make it happen! With a brand new logo for our Fun Walks for a Cure, new banners for your event, and updated awareness-raising materials, we are ready to support your cause. Contact Events@PHAssociation.org or 301-565-3004 x765 for more information. In addition to Fun Walks, we offer the Six Minute Marathon, a smaller-scale fundraising event. Learn more at www.PHAssociation.org/6MM.

Educational Opportunity for PH Patients and Families

Thu, 23 Feb 2012 21:54:00 GMT

5th Neonatal and Childhood Pulmonary Vascular Disease Conference

March 9-10, 2012
San Francisco, California

The University of California, San Francisco (UCSF) presents the 5th Annual International Neonatal & Childhood Pulmonary Vascular Disease. The conference will feature presentations from specialists in the field on a variety of topics, as well as a series for PH families in which patients and parents will share their personal PH journeys. The conference will also include a breakout session for families focusing on the unique challenges faced by families dealing with this illness.

Although this conference is primarily developed for medical professionals, it will be an excellent opportunity for PH families to learn, share and connect with each other. The cost of registration for patients, family members and caregivers is $10/person.

View full programming information and to register for the conference

PHA Webinar: Creativity and Healing Through Blogging

Wed, 22 Feb 2012 18:28:00 GMT

Creativity and Healing Through Blogging
Thursday, March 8, 6 p.m. ET/3 p.m. PT
Webinar (Phone AND Internet)

Medical research links creativity with reduced symptoms and improved health. In this second in the creativity webinar series, active bloggers and PH patients Leigh McGowan and Colleen Schnell discuss their experiences with blogging as a form of creative self-expression. Learn blogging tips and tricks and find out more about the online PH blogging community. This webinar also includes open time for attendees to ask questions and share their own blogging experiences with the group.

Better Sleep Week: Signs, Symptoms and Dangers of Sleep Apnea

Wed, 22 Feb 2012 18:23:00 GMT

2/21/2012 (KVDR Fox31 Denver) - Debra Messenger knew something was wrong. She was strangely sleepy. She fell asleep at a work conference, at a dinner party and even behind the wheel. She knew she snored at night, and she had a headache every morning when she woke up. Read article and watch the news video

Stand Up with the Rare Disease Community Feb. 29

Tue, 21 Feb 2012 20:20:00 GMT

Did you know 30 million Americans are living with rare diseases? Alone we are rare, but together we are strong. Celebrate a rare day by joining World Rare Disease Day on Feb. 29. Send a photo, contact the press, join an event and more.

Add your voice

Researchers Uncover New Advancements in Cardiovascular Medicine

Tue, 21 Feb 2012 20:17:00 GMT

(Medical Xpress) - With the month of February designated as Heart Health Month, physician-researchers in the Division of Cardiology at the Los Angeles Biomedical Research Institute (LA BioMed) – Dr. Matthew Budoff and Dr. Ronald Oudiz – continue to pave the way with their efforts to develop treatments and therapies for conditions affecting the heart, and to help improve overall heart health. "As the nation focuses on heart health this month, we continue to aggressively find ways to decrease the chances of heart failure – and subsequently death - for patients with pulmonary hypertension, a rare disorder that results in progressive heart failure and death," said Dr. Oudiz. Read article

Vicious Cycle of Sleep Apnea and Obesity in Kids

Tue, 21 Feb 2012 20:15:00 GMT

2/17/2012 (CNN Health) - The classic pediatric sleep apnea patient is a skinny 6-year-old with chronic congestion and dark circles under his eyes. We still see many kids in the sleep center who match this profile, but over the past 10 years, a new clinical picture has emerged. Coinciding with the dramatic rise in childhood obesity, there is a clear change in our younger patients. Not only do obese kids with OSA have a similar clinical presentation as adults, they unfortunately can have the same adverse outcomes if the sleep apnea is not treated. We are seeing pre-teens who have what we use to think of as adult diseases such as high blood pressure, pulmonary hypertension, heart disease and congestive heart failure. Read article

PHA Office Closed Monday, Feb. 20 for Holiday

Fri, 17 Feb 2012 21:35:00 GMT

The PHA Office will be closed Monday, Feb. 20, for the Presidents' Day holiday.

No PH Support Group in Town? Pick Up the Phone!

Fri, 17 Feb 2012 21:32:00 GMT

Want to chat with another patient? Can't make it out to a local support group meeting? A support group is only a phone call away with PHA’s monthly Patient Telephone Support Group. It always helps to have someone else to talk to, someone who understands what it’s like having PH. Our patient telephone support group makes it easier to participate in support groups regardless of your work hours, distance or health concerns.

PHA’s Monthly Patient Telephone Support Group

When: Thursday, Feb. 23, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

For assistance: Debbie, 301-565-3004 x755

Annual State of PHA Address Available Online

Wed, 15 Feb 2012 22:20:00 GMT

Recently PHA's President, Rino Aldrighetti, gave his annual State of PHA address. The cause continues to move forward in many directions and 2011 was a year of continuing strength in the fight against pulmonary hypertension (PH) through research, education, advocacy and awareness. Learn more about our strides in 2011 and goals for the new year by watching the webinar recording.

Study: Older Adults with Scleroderma More Likely Have PH

Tue, 14 Feb 2012 14:02:00 GMT

(The Journal of Rheumatology ) - Although patients who develop systemic sclerosis later in life may express the entire clinical spectrum of disease, we hypothesize that patients with late-age onset SSc incur a different risk for specific organ manifestations of disease compared to those with early-age onset SSc. Read article

Know Your Meds In & Out

Mon, 13 Feb 2012 20:16:00 GMT

People living with pulmonary hypertension (PH) take a lot of medications to help manage their disease, prevent the disease from worsening and treat the side effects from PH drugs. Taking ownership of your health and medication regimen is the most important step in preventing drug mishaps.

For starters, professionals recommend establishing a "ringleader" on your medical team. For most PH patients, the ringleader is your PH physician. PH is different from other diseases in many ways, especially when it comes to medications. Your ringleader is the physician who possesses the greatest overall knowledge of your condition(s) and treatments.

Visit the newly updated Health and Medication Management section to learn about taking charge of your health, drug interactions, catheter care, and transitioning medications.

PH Patient in the Spotlight on CNN en Español

Mon, 13 Feb 2012 19:59:00 GMT

Migdalia Denis, a pulmonary hypertension patient living in Florida, has taken a strong role in recent years in the Spanish-speaking PH community. In December she appeared on CNN en Español to talk about living with pulmonary hypertension.

Read more about the interview in PHANews (in English)
Watch Migdalia's interview (in Spanish)

Recognizing Pulmonary Hypertension

Mon, 13 Feb 2012 14:33:00 GMT

2/10/2012 (CBS Detroit) - Pulmonary hypertension — it’s a disease which affects women four times more often than men. That’s according to Pulmonologist Ghulam Saydain at the Detroit Medical Center’s Detroit Receiving Hospital. Read article and listen to the interview with Dr. Saydain

Staying Active with PH Webinar Thursday

Fri, 10 Feb 2012 20:35:00 GMT

Life After Diagnosis: Staying Active with Pulmonary Hypertension
Thursday, February 16, 12:00 p.m. ET
Webinar (Phone AND Internet)

After diagnosis, many patients experience difficulties adjusting to a changing lifestyle. Despite these challenges, patients can find ways to stay active, whether that be through exercising, advocacy or being with friends and family. During this session, hear from medical professionals and patients about the different ways you can stay active with pulmonary hypertension and how to maintain energy to continue doing the things you love.

Speakers:

Abby Poms, RRT
Rebecca H. Crouch, PT, DPT, CCS, FAACVPR
Hannah Lahmeyer, PH patient
Melanie Kozak, PH patient

Penn. State Rep. Keith Gillespie Puts Spotlight on PH

Thu, 09 Feb 2012 20:11:00 GMT

Penn. State Rep. Keith Gillespie interviewed PH patient and York PH Support Group Leader Michael McAdams and Dr. Dmitriy Zubkus, York Hospital Pulmonary Hypertension Program Director, for his 30 minute online legislative program. They talked about pulmonary hypertension, barriers to diagnosis, Michael’s personal journey with PH and his local support group.

Over the last two years, Michael has actively advocated to State Rep. Gillespie about the need for more PH research and education. Michael asked him to declare November PH Awareness Month and last year hosted State Rep. Gillespie at a support group meeting (pictured right).

Watch Rep. Keith Gillespie’s legislative report video
Find out how you can connect locally with your Members of Congress and educate them about the need for PH research and education.

Pledge to Give the Gift of Life this Valentine’s Day

Thu, 09 Feb 2012 20:05:00 GMT

Feb. 14 is National Organ Donation Day. More than 112,000 Americans, including pulmonary hypertension patients, are waiting for life-saving organ transplants.

Learn more and spread the word about organ donation | Learn more about PHA's transplant resources

Studies Shed New Light on how Nitric Oxide is Produced

Wed, 08 Feb 2012 15:29:00 GMT

1/20/2012 (Vanderbilt University Medical Center) - Studies that started as part of an exploratory collaboration for Judy Aschner, M.D., took an unexpected turn and have led to a whole new understanding of how nitric oxide — an important signaling molecule in the body — is produced. “I think we’re on the cusp of something that could change the face of how we treat infants at risk for chronic lung disease or with chronic forms of pulmonary hypertension,” Aschner said. Read article

Support Group Leader Michael Rivera Raises Awareness in His Community

Tue, 07 Feb 2012 23:19:00 GMT

Michael Rivera is on an awareness raising roll! In November, Michael spoke to a local newspaper reporter about pulmonary hypertension, his wife who has PH, and the new support group he founded in Corpus Christi. Recently, Michael appeared in the news again -- this time in an interview on his local NBC station. Watch his interview online

All of this news coverage has resulted in connecting at least one patient to the PH community. Juanita Garza began attending Michael's support group after she saw Michael in the news. Now, she regularly attends Michael's support group meetings and is looking forward to attending PHA's Conference in June for the first time.

Way to go Michael!

Rita Goes to Conference ... For 7th Time

Fri, 03 Feb 2012 20:37:00 GMT

PHA Conference blogger Diane Greenhalgh interviewed PHer Rita Orth (pictured right on left) yesterday and you can listen to the interview online. Rita has attended six PHA Conferences and is planning for her 7th in June. Listen to what Rita had to say about what Conference is like. In sum, "It's amazing!"

PHer Doug Taylor on TV

Wed, 01 Feb 2012 22:12:00 GMT

PHer Doug Taylor was interviewed on his local NBC 10 television station WISTV about pulmonary hypertension. Watch the interview

Enter the Plush Naming Contest

Tue, 31 Jan 2012 23:05:00 GMT

Calling kids of all ages! PHA’s new plush will be making his debut in our online store in the upcoming weeks, but we don’t know what to call him. You can help give him a name by submitting your ideas by Feb. 10. If we select your entry, we will send you a free “PHriend.”

Submit your ideas

Annual State of PHA Address Next Week

Mon, 30 Jan 2012 22:55:00 GMT

State of PHA - An Annual Update from PHA President Rino Aldrighetti
Monday, February 6, 2:00 p.m. ET
Webinar (Phone AND Internet)

The cause continues to move forward in many directions and 2011 was a year of continuing strength in the fight against PH through research, education, advocacy and awareness. In this webinar, join PHA's President, Rino Aldrighetti, as he discusses the current state of PHA and the growth of the PH community. He will also review PHA's recent accomplishments and goals for the new year.

FDA Warns About Stem Cell Claims

Fri, 27 Jan 2012 16:46:00 GMT

(FDA) - FDA cautions consumers to make sure that any stem cell treatment they are considering has been approved by FDA or is being studied under a clinical investigation that has been submitted to and allowed to proceed by FDA. Read article

Also, recently 60 Minutes did a report called "Stem Cell Fraud: a 60 Minutes investigation" that you can watch online.

Take Action on Your PH Health Coverage

Thu, 26 Jan 2012 22:37:00 GMT

You are Essential! Demand Healthcare Coverage That Meets Your Needs
Healthcare reform may seem like old news, but for the PH community things are just getting started.

What's up?
The U.S. Department of Health and Human Services (HHS) is currently working to define “essential health benefits.” Once they’re defined, essential health benefits will set the minimum requirements for affordable health insurance plans offered to individuals and businesses as a result of the Patient Protection and Affordable Care Act.

This is good for the PH community, so what’s the problem?
HHS recently issued a bulletin that outlines how it will define the “essential health benefits” package. While the bulletin includes many proposals that will help the PH community, it does not offer enough protection for people with chronic diseases. It lacks national oversight in defining what is essential, leaving it to the states. Furthermore, HHS wants to allow health plans to offer only one brand of prescription medication per class. For PHers using the new health insurance option, this may limit access to the unique combination of drugs they need. Read the bulletin

How can I make a difference?
Read and sign an online petition, created by The AIDS Institute and National Alliance on Mental Illness, which will be submitted directly to HHS Secretary Kathleen Sebelius. PHA has signed on, and, if we get enough signatures, we can make a difference before it’s too late. Your actions now can make a difference, for you and others, when the essential health benefits become effective in 2014. Sign the online petition

Lantos Community Service Award Deadline is Tomorrow

Thu, 26 Jan 2012 22:34:00 GMT

Your ideas for projects to raise awareness, advocate or expand services to the PH community can still be considered for a Tom Lantos Innovation in Community Service Award – but only if you submit the application by Jan. 27. The application, guidelines for applying and examples of past Lantos Award projects are all online so check them out.

Contact Mollie Katz with questions about the application process – MollieK@PHAssociation.org or 240-585-0774.

A Review of Inhaled Nitric Oxide in the Hypoxic Newborn

Wed, 25 Jan 2012 19:12:00 GMT

(RT Magazine) - Inhaled nitric oxide (iNO) is a form of therapy utilized by respiratory care practitioners in the treatment of a variety of pulmonary conditions, such as acute respiratory distress syndrome, pulmonary thromboembolism, status post cardiopulmonary bypass, and lung transplantation. Prior to the initiation of iNO therapy, practitioners should be well versed in current recommendations for the administration of iNO. Incorrect administration of iNO therapy may potentially cause a wide array of side effects RCPs should be aware of and recognize. Read article

Annette Markin, 55, Gave all to Kids

Wed, 25 Jan 2012 19:10:00 GMT

1/7/2012 (Omaha.com) - For Annette Markin, it was all about the kids — her sons, her pupils, hospitalized youngsters, all children. Annette taught for 25-plus years, most of them in first-grade classrooms. Markin died Dec. 30 at her Omaha home from complications of pulmonary hypertension. She was 55. Read article

Mariposa News (PDF)

Tue, 24 Jan 2012 15:06:00 GMT

Read the winter issue of Mariposa News - The Newsletter of PHA Europe.

Opera Singer Awaiting Second Double Lung Transplant Inspires Awareness

Tue, 24 Jan 2012 15:03:00 GMT

1/20/2012 (WKYC) - She's performed in some of the most prestigious opera houses in the world, but since Christmas Eve, Charity Tillemann-Dick has been waiting for her second double lung transplant at Cleveland Clinic. Pulmonary Hypertension required the opera singer to undergo a double lung transplant in 2009. Read article and watch the video

Essay Winners Talk of Struggle to Give Care, Get Care With Cost in Mind

Tue, 24 Jan 2012 14:55:00 GMT

1/19/2012 (Boston.com) - Four winners have been selected in the Cost of Care essay contest aimed at promoting awareness among patients and providers about how much health care costs. Among the winners was Dr. Andrew Schutzbank cq, a doctor at Beth Israel Deaconess Medical Center, who wrote about a patient in her 70s who could not be discharged from an expensive cardiac care unit because she was taking a drug for pulmonary hypertension that costs $1,400 when a person is inpatient but less as an outpatient. Read article

PHer Wins Essay Contest and Donation to PHA

Mon, 23 Jan 2012 22:19:00 GMT

PHer Tom Hamilton sent us the below information about how he recently won an essay contest about his favorite charity, us! Check it out!

Great News! In December, I entered a sweepstakes given by the PayPal Advantage Program. In order to enter the contest you had to write a short essay on your favorite charity and why it is your favorite charity. From that point, the winners were randomly selected from the entries received. Naturally, I chose PHA for all the great things they do and I ended up being a winner of a $250 donation to PHA's PayPal account! Just thought it was really cool and wanted to share the good news.
--Tom Hamilton

Here is his entry:

My favorite charity is the Pulmonary Hypertension Association (PHA). Pulmonary hypertension is a rare disease that affects mainly women and children. Pulmonary hypertension is, put simply, high blood pressure in the lungs caused my narrowing of the veins and arteries. There is no cure and it is terminal. There are many promising treatments and people are living longer and longer because of the treatments. The only other option is a lung transplant. I have pulmonary hypertension and have been approved for a double lung transplant. I am a 47 year old male. The main reason I like the charity so much is that they provide research and are a great help to the patients. I donate a percentage of some of my auctions to this charity and others. The reason I donate to PHA is that I go to my clinic and see patients 11 or 12 years old that are facing lung transplant. I know patients that are just little kids with pumps that put medication straight into their heart. I have meet brother and sister patients who have had to grow up with this terrible disease and I have seen the people in my support group pass away expectedly and unexpectedly. I donate to this charity for the generations that will come after me so that they may have a cure.

Mary Svikhart Raises PH Awareness at Healthcare Event

Thu, 19 Jan 2012 00:06:00 GMT

Mary Svikhart, a Pennsylvanian woman with pulmonary hypertension, recently attended an event to promote better healthcare coverage and was featured in The Evening Sun's story about the event. Thank you, Mary, for sharing the story on the PHAware email group.

Read Mary's story in The Evening Sun | Get involved with the PHAware Campaign

Walking and Beating: A NYPD Cop and PH

Wed, 18 Jan 2012 14:18:00 GMT

(Caring Voice Coalition) - Excerpt: "I eventually went back to my normal duties, but as the years moved on I began to feel sluggish, I would tire easily, and I began to have difficulty breathing. I developed a loud cough that I couldn’t seem to get rid of. My normal routine became a daily challenge. I would get ready for work, head out the door, and have to grab a wall as I struggled to catch my breath." Read article and watch video

PHer Vlogs (Video blog) on Tips for College

Tue, 17 Jan 2012 23:47:00 GMT

Check out this vlog (video blog) on tips for college when you have a chronic disease by Sean Wyman, an active member of the PHA community.

Webinar Tomorrow: Making a Difference in the PH Community Through a Lantos Award

Tue, 17 Jan 2012 23:39:00 GMT

Make a Difference in the PH Community: How to Apply for a Lantos Community Service Award

Live E-Learning Event
Wednesday, January 18
8:00 p.m. ET

You can help the PH community breathe a little easier! Do you see a challenge in the PH community and have an idea for how to solve it? A Lantos Community Service Award can provide you with money and support to make your idea a reality.

For example, when Katie Grace Goebner began IV treatment for her PH at age 5, she needed a bag for her pump. Her mom's search for a child-appropriate bag led to a search for something that would make living with PH easier for young PHers everywhere and eventually to a Lantos Community Service Award.

Learn more about how to get support for your idea during this live webinar with PHA staff. Award winners may even receive a $1,000 scholarship for PHA's International PH Conference!

Conference Registration is Open!

Fri, 13 Jan 2012 22:49:00 GMT

PHA’s 10th International PH Conference and Scientific Sessions brings together patients, family members and medical professionals from around the globe, making it the largest PH community gathering in the world. Highlights include networking opportunities, patient education and dedicated education sessions for medical professionals. Register now and receive an early-bird discount of $25.

Learn more and register | Read the Conference blog

Pulmonary Hypertension Registry IDs Features of Pediatric PH

Fri, 13 Jan 2012 16:25:00 GMT

1/11/2012 (Doctors Lounge) - An analysis of data from the Tracking Outcomes and Practice in Pediatric Pulmonary Hypertension registry has identified clinical features specific to the care of children with pulmonary hypertension, according to research published online Jan. 11 in The Lancet. Read article

Rare Disease close-up: Pulmonary Arterial Hypertension

Thu, 12 Jan 2012 16:02:00 GMT

(Catalyst) - Pulmonary hypertension, or PH, is high blood pressure in the arteries of the lungs that can lead to heart failure. The Pulmonary Hypertension Association (PHA) provided this whitepaper on Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes. Read article and download the whitepaper

Pulmonary Pressure Prognostic in Heart Failure

Thu, 12 Jan 2012 16:00:00 GMT

1/10/2012 (medpage Today) - Pulmonary artery systolic pressure is not only a strong predictor of death in heart failure patients, but also provides prognostic information independent of known predictors of outcomes, according the results of a community-based study. Read article

Montana Hope Project Sending Young PH Patient to Disney World

Thu, 12 Jan 2012 15:59:00 GMT

1/5/2012 (Missoulian) - The 12 students in Mrs. Heyer's second-grade classroom at Clinton Elementary School knew something was up Thursday afternoon. A rather large crowd had filed into their class around 1:30 p.m. In it was a host of law enforcement officers and a scattering of other adults, some with cameras and other carrying trays of cupcakes. Read article

Transplant Survivor Thankful for 'LifeGift'

Wed, 11 Jan 2012 17:36:00 GMT

12/29/2011 (My Fox Houston) - Houston resident Twana Schulz underwent double lung transplant surgery on Christmas Day 2010 and is thankful for the gift that gave her a second chance to live. Read article and watch video

France OKs United Therapeutics IV treatment

Wed, 11 Jan 2012 17:34:00 GMT

12/28/2011 (Gazette) - French regulatory agency Agence Francaise de Securite Sanitaire des Produits de Sante has approved IV use of Remodulin, which is already approved in most of Europe and in the U.S. for subcutaneous infusion treatment, or continuous injections just under the skin, according to United Therapeutics information. Read article

Spring into Action: Planning your Spring Special Event

Tue, 10 Jan 2012 16:30:00 GMT

Thursday, Jan. 12, 3:00 p.m. ET
Webinar (Phone AND Internet)

Let’s get the ball rolling for an event-ful 2012! Now is the perfect time to start planning a Spring special event. To help get you started, this webinar will provide an overview of planning a PHA special event and the PHA resources available to help you along the way.

Improve Life for PHers

Wed, 04 Jan 2012 15:16:00 GMT

If you had $5,000 to do something to help the PH community, what would you do? This is not a hypothetical – it’s a real opportunity for you through the Tom Lantos Awards program through PHA. And your ideas are being accepted for review until Jan. 27, 2012.

Learn more and apply today!

Happy Holidays and Thank You

Fri, 23 Dec 2011 17:41:00 GMT

Happy Holidays from the Pulmonary Hypertension Association. All of us at PHA wish you a happy and hopeful 2012. We thank you for all you do in the fight against PH. We are empowered by you.

View our holiday card

Celebrate with PHA's Patient Telephone Support Group

Wed, 21 Dec 2011 14:36:00 GMT

Sometimes the holidays are stressful times. It always helps to have someone else to talk to, someone who understands what it’s like having PH. Want to chat with another patient? Can't make it out to a local support group meeting? PHA's patient telephone support group reaches out to those who can't make it to local meetings, whether because of health, work hours or distance.

PHA's Patient Telephone Support Group

When: Thursday, Dec. 22, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

For assistance: Sophie, 301-565-3004 x758

BREAKING NEWS: USA Today includes information on PH

Wed, 14 Dec 2011 18:01:00 GMT

UPDATE! Check out the USA Today insert on pulmonary hypertension and pulmonary health that was released in selected regions Friday morning! View insert

Friday, December 16
Boston, Chicago, Dallas, Nashville, St. Louis, Washington, D.C. and surrounding states

This Friday, USA Today will include an 8-page section on pulmonary hypertension. This section will reach more than 1.2 million readers in six major metropolitan areas and surrounding states with information about the symptoms and treatment of PH.

Most importantly, in the section’s articles readers will find the personal stories of patients and medical professionals impacted by PH and learn where they can get more information. In two display ads, they’ll discover ways to contact PHA and to donate to our new Robyn Barst Pediatric Research Fund (www.PHAssociation.org/BarstFund).

Check it out! The section will appear in regions listed below. It will also be available online.

Boston (includes all of New England, including Maine)
Chicago (includes Milwaukee & Northern Indiana)
Dallas (includes Oklahoma & Arkansas)
Nashville (includes all of Tennessee & Western Kentucky)
St. Louis (includes Southern Illinois)
Washington, D.C. (includes Baltimore & Virginia)

Spread the word to family and media

The USA Today insert can help you educate your family and friends about PH. While you’re at it, encourage them to contact their own local media – print, broadcast or online – to share more information about PH.

Everyone whose life has been touched by PH has a story worth telling, and media coverage takes many forms — from the news story to the letter to the editor. PHA is here to help with media coverage. Ask your friends and family to share their stories with local reporters. They can get started at http://www.PHAssociation.org/Awareness/50StateMediaChallenge or by contacting Elisabeth: ElisabethW@PHAssociation.org; 301-565-3004 x753.

Awareness Month Victories: Even Pre-K Students Can Make a Difference!

Tue, 13 Dec 2011 18:56:00 GMT

Our community found some truly creative ways to raise awareness about pulmonary hypertension during PH Awareness Month this year. Everyone from pre-schoolers to church parishioners is advancing our cause!

Barbara Thompson added another proclamation to her list with one from the mayor of Memphis, Tenn. She then gained coverage about pulmonary hypertension, PH Awareness Month and the four proclamations she garnered – state of Tennessee, city of Bartlett, Shelby County and Memphis – in her church bulletin of all places. Like so many other PHers this November, Barbara thought outside the box to get her friends and acquaintances thinking about PH. Way to get creative, Barbara!

Haley Lynn, a 19-year-old with PH, teaches a Pre-K class, and she talked to her kids about pulmonary hypertension this month. Haley says:

This is my Pre-K class that I teach in Amarillo, Texas! They didn't quite comprehend much because of their age, we broke it down very simple on what lungs are and that's about all we explained! We mainly wanted to do this so we can hang these PH coloring papers in the halls for our other teachers and staff members to see as well. And the parents! It made a cute lesson.

Keep up the great work throughout the year, and let us know about your victories, large and small, so we can share them with the community! Contact Web@PHAssociation.org

Holiday JAM for PHA

Mon, 12 Dec 2011 18:45:00 GMT

Bernie Gore organized the inaugural James A. Martin Memorial Walk for PH (“JAM for PHA”) in memory of her father this past June. Bernie is also very involved with the St. Dorothy School in Glendora, Calif., where her eldest child attends. The school’s 8th grade class decided to find a way this November to continue support of the PH cause in the spirit of the holiday season, and to kickoff fundraising efforts for the 2nd Annual “JAM for PHA,” slated to take place in 2012. Below you can see how the students and faculty at the school successfully took action and became an inspiration to others. She reports:

The 8th grade students led by their teacher, Mrs. Sue Sweetman… shared in an effort to show the giving spirit of Christmas. Honoring the memory of James A. Martin, they sponsored a 2011 Christmas Tree & Wreath sale to raise funds in support of finding a cure for PH! Way to go, Bruins!

Southern California PHers: stay tuned for more information about the 2nd Annual James A. Martin Memorial Walk for PH in 2012!

Awareness Month Victories: Singing and Dancing for PH!

Thu, 08 Dec 2011 20:46:00 GMT

Our special event coordinators are you, our PH community, and as always, the events this year were fun and creative – like the two we have to report on today.

Zumbathon for PH
Canton, Connecticut
PH patient, Generation Hope member and Board member Colleen Brunetti wanted to build on the dance fitness craze of Zumba in order to raise awareness and funds for PH. Held on November 18, this was the first event of its kind for PHA! Because of Zumba’s overall popularity in this country, the event drew many who were not familiar with PH, making this a great awareness raiser! Five Zumba instructors donated their time to lead classes for the public throughout the day, and attendees paid an entrance fee, which went directly to benefit PHA programs and research. The Zumbathon included a silent auction and plenty of creative touches, like homemade lollipops and buttons for sale, courtesy of local PH patients.

Sing and Soar for a Cure
West Milford, New Jersey
High school student and PH patient Haley, along with her vocal performance group, hosted a fun special event filled with singing and instrumental performances at a local restaurant in West Milford, N.J. on November 13. The group and attendees were treated to a special guest accompanist: trumpeter Kent Smith, who performs with the Rolling Stones! Over 60 people attended the concert. Even though donations were only suggested, they were able to raise over $1,000 for PHA!

Keep up the great work throughout the year, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Listen to PHer on Radio Friday

Wed, 07 Dec 2011 16:36:00 GMT

Friday, December 9
9:00 a.m.
Listen live (click the “Listen Live” button on the top right of the page)

PH patient Merle Reeseman will be on the radio this Friday, December 9, at 9:00 a.m. Merle is a local support group leader, online chat support group leader, PH activist, and a recipient of PHA’s Outstanding Citizen Award. Support her by listening on Friday and telling all your PHriends about it!

You can listen live on WPIC AM 790 if you live in the Mercer County, Pennsylvania, area OR you can listen live online at http://www.790wpic.com/ and click on the “Listen Live” button.

Awareness Month Victories: Dr. Barst Speaks Out on National Radio Tour

Mon, 05 Dec 2011 21:08:00 GMT

Pulmonary Hypertension Awareness Month ended on a high note this year! Dr. Robyn Barst, former Director of the New York-Presbyterian Pulmonary Hypertension Center, participated in nine radio interviews on November 30 to discuss the disease and the importance of early diagnosis. The radio media tour, sponsored by Actelion Pharmaceuticals, included interviews on the following stations:

KXYL – Regional Central Texas (Abilene/Brownwood/Waco)
WIZM – Madison/La Crosse, WI
KWLM – Minneapolis
WGRT – Detroit
KCMN – Colorado Springs
It’s Your Health Network – National
WAMV – Roanoke
KPQ – Seattle
WDIS – Boston

Keep up the great work throughout the year, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Press Coverage – Read All About It!

Thu, 01 Dec 2011 17:20:24 GMT

Pulmonary Hypertension Awareness Month is a great opportunity to pitch PH to a reporter. PHers across the country received media coverage for pulmonary hypertension this November, as you can see from the article highlights below.

Arizona, Tri-State Online: Joy Gore gained coverage about pulmonary hypertension in the Arizona, Nevada, California tri-state area by discussing her experiences with the disease and her work as a support group leader. Gore's Awareness Month triumphs include convincing her representative to co-sponsor the Tom Lantos Research and Education Act, obtaining a proclamation for Awareness Month from the governor, and raising funds for PH as co-chair of a fundraising gala. Read the article
California, Marketwatch.com: This press release issued by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford promotes awareness about PH and their annual race against PH. It also announced the launch of the Pulmonary Hypertension Association's 6-Minute Marathon. Read the press release
California, Scope: PH patient Nathan Diehl, who participated in the annual Race Against PH at Stanford, tells his story in this interview with the Stanford School of Medicine blog. Read the interview
Colorado, The Gazette: PH patient Margaret Hrchek speaks out in this article about patients overpaying for oxygen concentrators. Read article
Florida, Florida Today: With encouragement from Janet Rooks, Dr. Pamela Tronetti featured pulmonary hypertension in her weekly health column. Read the article
Florida, Orlando Sentinel: The Orlando PH Support Group's Chili Cook-Off and Bake Sale was highlighted in the Sentinel's events section. Read the event announcement
Iowa, Iowa State Daily: Liz Kirke, a member of the Chi Omega sorority, passed away from PH in 1985. Her brother had also passed away from PH at the age of 16. A scholarship fund was established in Liz's memory and the sorority sisters raise money for the fund each year. Read the article
Louisiana, Shreveport Times: Martha Thompson, a 75-year-old woman who was just diagnosed with PH four months ago, talks about PH and her new PH support group. Read article
Michigan, ABC 7 - WXYZ: Rose Gjorgjeski and her husband are closing their family bakery after his diagnosis with pulmonary hypertension. They know it's the right thing to do, but Rose says, "Meeting these people, the wonderful customers ... they're not just customers, they are family." Watch the video
Mississippi, ABC 13 – WLOX: PH patient Michael Condreay and Dr. Ijlal Bahber from the Singing River Health System Regional Pulmonary Hypertension Center in Ocean Springs team up to explain PH in this interview. Watch the video
New Mexico, ProView Networks: Jason Garcia appeared on The Steve Davis Show, an online television show, to raise awareness about PH and to promote his 2nd Annual Fun Run/Walk. the walk is held in memory of his father who passed from PH. Watch video (starts @ 2:30 ticker)
New Jersey, Hudson Reporter: PH patient JoMarie Bennett and her husband Vincent received a proclamation designating November PH Awareness Month from their city council. This short description of the presentation includes a photo. Read article (bottom of page)
New Jersey, Mahwah Patch and NorthJersey.com: Mahwah High School T-Birds and their fans dressed in purple to support Pulmonary Hypertension Awareness Month and team mascot Vinny Accurso, who is living with PH. (And just in case you're interested, the T-Birds won the game 55-20!) Read the Mahwah Patch article & read the NorthJersey.com article
New York, PressConnects.com: Lisa Lannone wrote this piece about PH Awareness Month, the importance of recognizing the symptoms of PH and her PH support group. Read viewpoint piece
Ohio, Lancaster Eagle Gazette: Dr. Christian Tencza and his team at Fairfield Pulmonary and Critical Care Associates at the Fairfield Medical Center were featured for attending PHA's PH Professional Network Symposium. Read article
Pennsylvania, The Morning Call: This article features the story of 81-year-old patient and PH support group leader Joan Stevenson. "I won't take: 'It can't be done' as an answer," says Joan. Read article and see short video clip of Joan
South Carolina, The State: Doug Taylor wrote this letter to the editor about PH, the need for earlier diagnosis, and the importance of research and education. Doug urges readers to contact their Members of Congress to co-sponsor the Tom Lantos PH Research and Education Act. Way to go Doug for awareness and advocacy! Read Doug's letter to the editor
Tennessee, NBC 3 – WRCB: Dr. Mike Czarnecki and patient Christine Wilkinson team up to educate others in this interview about PH and its symptoms. Read article
Tennessee, PRLog: Barbara Thompson pitched this press release about PH Awareness Month that included information PH, PH Awareness Month proclamations from Governor Bill Haslam, Shelby County and the city of Bartlett, and how to get in touch with resources at PHA. Read the press release
Texas, Corpus Christi Caller-Times: Delia Rivera, who is living with PH, and her husband Michael, were featured in this lengthy story in their local paper. The Rivera's story includes the loss of Delia's sister to PH because she wasn't properly diagnosed, the Rivera's PH support group, and Delia's own journey with PH. Read the article
Texas, The Paper Magazine: PHA Board of Trustees member and PH parent Jack Stibbs organized the arm wrestling competition featured in this article, which also raised awareness about PH and promoted Jack's upcoming crawfish festival. Read article
Virginia, Rockbridge Weekly: Seven-year-old Ashley Conner is giving away some of her belongings in exchange for donations to the Make A Wish Foundation. Read more
Online, Daily Rx: This coverage of a recent research study includes information about PH and the six-minute walk test as an indicator as to whether a patient's PH will worsen. Read article
Online, RT Magazine: PH Online Awareness Day got a shout-out in this online publication for respiratory therapists. Read the article
Canada, Simcoe.com: Ruth Dolan and Loretta Chu share their stories in this article, which highlights their efforts to fight back against the disease. Loretta helped found the Toronto chapter of PH Canada, of which Ruth is a member. Ruth, whose daughter Emily has PH, has tasked herself with educating every community in the province about the disease. She made progress this November with three PH Awareness Month proclamations. Read article

Let PHA know about your Awareness Month victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org. For more information about sharing your story with a local reporter, contact PHAware@PHAssociation.org.

I'm Most Aware of My Pulmonary Hypertension When...

Wed, 30 Nov 2011 15:21:34 GMT

We asked people living with pulmonary hypertension to finish the following sentence: "I'm most aware of my pulmonary hypertension when..."

When I have to take my meds. So I can enjoy my time with my family

I'm walking with family & friends and I realize that they have moved ahead of me.

I am trying to sing in church, a higher note, and unable to have the breath to push the sound without coughing

I feel my heart pounding out of my chest and can hear it in my head.

when i feel my heart racing like mad and when i have to take my meds

When family comes from out of town and I can't go out with them because my legs are killing me. And every time I have to redo my Remodulin :/

Be able to wake up at night having chest pain.

I am reminded all the time. When I look in the mirror and I see my hickman cath bandage or my face is flushed from the FLOLAN. I think the saddest for me is knowing I can't take my kids outside to play (by myself) because I can't keep up or lift them.

When I push myself too hard at work :(

I think of the future...

When taking meds throughout the day

When I experience uncomfortable palpitations.

The pain the helplessness and now she has gone. It still her it took her life at 19

When I trip over the oxygen tubing 100 times a day.

I dream of traveling abroad.

When I'm making sure I have enough oxygen with me to go somewhere for the day & then have to switch tanks while I'm there. Also when my dog steps on my tubing or it gets stuck in the door when I'm walking and it yanks me.

When I'm standing in front of a big flight of stairs.

Whenever I exert any energy and that shortness of breath comes about!

I try to rush to get things done...

at night time when i don't have the energy to walk up 2 flights of stairs to get to my bedroom so i end up sleeping on the sofa :-(

When I dream of having babies

I know longer have PH because I had a transplant, but I am reminded of jaw pain! Never being able to just take a bite of something without pain! I still forget that I no longer have to deal with that, but brace myself esp. when I eat chocolate!

I've been out running errands and get tired too quickly.

When i try to play w.my grandbaby n i can't ...cause i SOB

my daughter's head gets sweaty and she's short of breathe and someone always says, "Oh, does she have asthma?"

I realize I can no longer walk, talk and chew gum at the same time.

When I meet the woman of my dreams and she tells me she loves long romantic moonlit walks.

When i see all the little babies around me and know that having one of my own is too dangerous.

When I play with my 18 month old son- which I can now enjoy b/c of wonderful doctors and meds.

When I walk up the stairs in the morning. Or when I am playing with my 3 boys outside!

I out walking and esp when it's cold.

When I go out in the cold, when my oxygen hose gets caught on stuff and pulls my ears, when I get chest pain and palpitations, when the smell of cut grass takes my breath away, when I discover that the grocer has packed the bags too heavy for me to carry, when my daughter says she wants to wait 10 years before having children and I wonder if I will be here.

I do not have PH, but I know 2 people who have had it. My heart goes out to every single one of you who commented. I cannot imagine how hard it has to be living with such a terrible disease!! I look up to you all, you have inspired me so much! Usually when I read these things, I see the same names of people who have commented. :(

I get stressed and I have to stop whatever I'm doing or worrying about and think about me.

When I attend a PHA support group meeting and I hear a chorus of oxygen machines whirring and puffing away and I tell myself not to be scared that one day I might be joining the choir. Just enjoy the music now and as long as it lasts.

When faced with a flight of stairs! When my kids realize they have walk too fast & come back to get me.

I step on my oxygen tubing....lol.

I have to sit down and rest for a couple minutes.

Walking up stairs! But since my lung transplant I don't have to think about

I think twice about doing something like rollerblading, hiking, etc. When my limitations hit me in the face.

Every day. It's all the small things that add up. Walking up stairs, having to finally give-in & accept the help for simple things, such as housework. Being tethered to an oxygen cord and being caught in it. Having to plan my work day around my Lasix pill. Constant insomnia. My list could go on and on... But like so many of you I'm just thankful I have today.

My husband has PH and I am most aware of his PH when I get home from work in the evening & he needs to go take a nap b/c he is fatigued. And also when his mini-med Remodulin pump starts beeping every night at the same time for him to change it.

The shortness of breath from bending over to put my shoes on, getting dress and of course carrying my purse with my pump in it to bed, shower everywhere 24/7

When I load myself up like a pack mule to leave the house -- my oxygen "backpack," an extra tank, Ventavis pack, purse, and whatever else I need to be taking care of...

When I back my car in driveway, because I can't walk around it anymore

I am climbing stairs and outside in cold weather.

When I want to be physically active and I have to take my oxygen everywhere I go. When I'm short of breath.

When I want to go to church, go places with friends, go see family, etc. and don't even have enough energy to take a shower and get dressed! Which happens a lot!!!!

When I cannot even get my laundry out of the dryer

Trying to hurry or walk up an incline or steps. I'm not crazy about stooping over, either

Awareness Month Victories: Congressional Luncheon Builds Awareness, Legislative Support

Tue, 29 Nov 2011 19:50:00 GMT

"I found out that I am one of only a few 30 plus year survivors of PH...I have been to the very rock bottom with this disease and I know the despair, sorrow, and destruction associated with everything patients deal with trying to live with PH. I have been fortunate enough to know the other side as well, the side that gives hope to continue the battle against PH."
- Jeannette Morrill shared her story at PHA's Congressional Luncheon

Each November, PHA hosts a luncheon in Washington, D.C., that brings pulmonary hypertension patients, their families, and their medical professionals together with Members of Congress and legislative staff. The goal: that our elected officials understand pulmonary hypertension and keep the PH community in mind when they make policy decisions.

PHers from across the country worked to make this year's event a success by participating directly or inviting their Members of Congress. Thanks to your calls and emails, nearly 100 people, representing more than 25 congressional offices attended the luncheon.

Powerful presentations from PH patient Jeanette Morrill, PH-treating physician Dr. John Berger, Congresswoman Lois Capps, Congressman Kevin Brady and Sara Mabry from Sen. Bob Casey's office, inspired many in the audience to get involved in the fight against PH.

After lunch, PH community members reinforced the message by visiting their representative's offices. Within a week, four Congressional offices contacted PHA to let us know that they plan to co-sponsor the Tom Lantos PH Research and Education Act. Pending co-sponsors include Mike Michaud (D-ME), Christopher Murphy (D-CT), Jason Altmire (D-PA), Louise Slaughter (D-NY). We'll provide PHANews updates when these co-sponsorships become final.

What Can You Do?

Members of Congress and staff from the following legislative offices participated in PHA's Congressional Luncheon and Advocacy Day. If your senators or representative are on the list, thank them. If they're not, follow up and let them know you're sorry they couldn't attend. Either way, ask them to co-sponsor the Tom Lantos PH Research and Education Act.

Find contact information for your Members of Congress. For more information or to find out if your Member of Congress has already become a co-sponsor, contact PHA's Grassroots Campaigns Associate, Elisabeth Williams at 301-565-3004 x753 or Advocacy@PHAssociation.org.

Offices Represented at the Luncheon or Visited During Advocacy Day

Rick Crawford, AR
Lois Capps, CA (bill sponsor)
Richard Blumenthal, CT
Joe Courtney, CT
Jim Himes, CT
John B. Larson, CT
Joe Lieberman, CT
Christopher Murphy, CT
Eleanor Holmes Norton, DC
John Carney Jr., DE
Corrine Brown, FL
C.W. Bill Young, FL
John Lewis, GA
Hank Johnson, GA
Daniel Inouye, HI
Dave Loebsack, IA
Jesse Jackson Jr., IL
John Sarbanes, MD
Todd Platts, MD
Elijah Cummings, MD
Michael Michaud, ME
Charles Rangel, NY
Gregory Meeks, NY
Louise Slaughter, NY
Nita Lowey, NY
Bob Casey, PA (bill sponsor)
Joe Pitts, PA
Todd Platts, PA
Richard Burr, SC
Mick Mulvaney, SC
Joe Wilson, SC
Kevin Brady, TX (bill sponsor)
Sheila Jackson Lee, TX
Gerald Connolly, VA
Randy Forbes, VA
Jay Inslee, WA
Nick Rahall II, WV

Couple Spur Support for PH Patients

Tue, 29 Nov 2011 15:04:27 GMT

11/28/2011 (Corpus Christi Caller-Times) - After losing a family member to PH, Michael Rivera prompted Corpus Christi Mayor Joe Adame this month to proclaim it Pulmonary Hypertension Awareness Month and asked Gov. Rick Perry to issue a proclamation last week for Texas. Read article

A Mission for Breath

Tue, 29 Nov 2011 15:02:50 GMT

11/28/2011 (Mohave Daily News) - The average human takes more than 650 million breaths in their lifetime, but at age 67, Fort Mohave resident Joy Gore has to fight for every last one. "I'm on a mission," Gore said. "I don't want anybody else to go through what I've gone through. With a support group, you can learn more about how other people are handling PH and what kind of new drugs and procedures are available for it." Read article

I Was Misdiagnosed ____ Times! Stories of Diagnosis

Mon, 28 Nov 2011 22:25:00 GMT

We asked community members to fill in the blanks of the following sentences. Below are their responses.

I went to [____] doctors, was misdiagnosed [____] times, and had been living with symptoms for [____ weeks/months/years] before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was [________].

I went to 5 different doctors, was misdiagnosed 4 times, and have been living with symptoms for over a year before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was to keep going, keep trying to get answers and not let everyone else kick me down because I didn't look sick.

I was one of the lucky ones. I went to the local hospital which sent me to a bigger hospital which diagnosed me and then sent me to an even bigger hospital where I met my wonderful doctor and her amazing staff.

I went to a bunch of doctors, was misdiagnosed hundreds of times, and had been living with symptoms for 8 or 9 years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was all the doctors thought I was having anxiety attacks and one doctor even had an echo from 6 years before I was diagnosed that said I had a PA pressure of 40 and he didn't think that was relevant!!!

I went to 6 doctors, was misdiagnosed 4 times, and had been living with symptoms for 8 years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was getting them to listen and then finding out I had HHT and PAH. I actually had a doctor ask me at 10 (20 years prior to my diagnosis) if I was faking the symptoms for asthma. I wish she would have looked into more back then.

I only went to one doctor and was married to a cardiac nurse at the time. With follow up each year, guess you could say I was misdiagnosed three times and have been living with symptoms for six (yes!) years. Just diagnosed and having a right heart cath on Monday. The most difficult thing has been being made to feel like "it was all in my head" and that I was a hypochondriac. :( (My new doctor is a PH specialist and says it is incredible I've had symptoms and echoes showing high pressures for this long and I'm not either dead or deathly ill.) Be your own advocate!!!!!!!!!

I went to 4 different doctors and was misdiagnosed twice....with asthma! I believe I was living with the symptoms for 4 years before I changed my primary doctor and he put me straight in the hospital on my first visit with him (thank God for him). The difficult part of being diagnosed was the doctors trying to tell what was wrong when I knew my body but no one would listen!!!

I went to 3 different doctors, was misdiagnosed 3 times and had been living with PH for at least 7 years. The most difficult thing was that I was young at the time (18) No one would listen!!!

I went to countless doctors and ER visits and was misdiagnosed for at least 2 years. The most difficult was that people who knew me and loved me doubted me. :(

I went to 6 doctors, was misdiagnosed even more often, and had been living with symptoms for 15 years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was people truly believed I pretended to be ill just to gain attention or to manipulate.

I also was one of the lucky ones. I only had symptoms for 4 months (very quick, very severe), the first doctor I went to (cardiologist) said it was a lung problem, we spent 6 weeks eliminating secondary causes and then I had a RHC (right hearth catheterization) and went to a PH specialist in northern Virginia. Just amazingly fortunate after all the other sad tales.

My daughter was diagnosed at age 2 along with a heart defect she was born with. She fought so hard to be like there was nothing wrong. She had a fab life and was very strong. She partied with her friends. She was able to do all the things she loved. Sildenafil helped. Then at 19 she took a turn for the worse. The hospital said she'd be fine. They sent her home. Four hours later she passed. What I'm trying to say is that I had my daughter for 16 years more than doctors expected. Just keep fighting, all of you. Hopefully they'll find the cure. Love to you all. xx

I went to 4 doctors including a cardiologist and a pulmonologist, was misdiagnosed 7 times and had been living with symptoms for 2 years before being diagnosed with PH. The most difficult thing about trying to get my diagnosis was that people didn't believe there was anything physically wrong with me. I was told that I was just stressed and depressed from caring for my ailing father, but I KNEW there was something physical wrong with me! Very, very, frustrating.

I went to one doctor and I went through 6 tests. After the last test they told me I had PH. And then it took 1 and a half months to get to see my PH doctor. She is the most wonderful doctor. My meds are not working so she is going to try the infusion on me. I found out June 2011.

This is a terrible disease. Always insist on a right heart catheter immediately

Wow, I can't believe these stories of frustration. I was lucky in that I was diagnosed fairly quickly. The symptoms of PH are awful, but attributable to other diseases. Chest pain, extreme fatigue and sometimes fainting...this is not normal. Stick to your guns when talking to your doctors. Do your own research. There are many resources available to you - use them.

Wow! My Mom went through exactly what these people are describing. It was heartbreaking to read these posts. I'm very grateful for PHA.

I think I lived with the symptoms a lot longer than I should have, always contributing it to something else. One pulmonary doctor told me I couldn't breathe because I didn't exercise. Plus being overweight is the reason why most doctors feel everything is wrong with you so that is why getting my diagnosis was so hard.

My mother went to a couple of doctors who diagnosed her with COPD. As time progressed, her symptoms worsened. I located a well-known cardiologist who ordered an echocardiogram and learned she had right side heart damage due to PH. He referred her to a specialist who then ordered a right heart cath. Her pulmonary pressure was 118 - so very severe. We have been treating her with meds and currently an infusion for the past two years. This disease is just horrible. More money needs to be raised and people made aware of this in order to continue the research and hopefully find a cure! So many of these stories sound so familiar! Always get a second opinion when in doubt!

I was one of the lucky ones. My PCP had me have lots of tests done then sent me to his cardiologist. He did a right heart cath and my pulmonary pressure was 64. I got my diagnosis just less than 3 months after my symptoms started. I have a great bunch of doctors that make me feel special.

I went to several doctors, was misdiagnosed 4 times, and had been living with symptoms for 2 and a half years before being diagnosed with pulmonary hypertension. The most difficult thing about trying to get my diagnosis was that my body told me that this would kill me, but nobody believed me.

All these stories are so familiar. I went to 4 doctors over 3.5 years, I was told by the cardio doctor that nothing could be done. Once I ended up in the hospital for 4 days I got the right diagnosis, but by then most my friends and relatives thought I was a hypochondriac. We are really sick, strive to keep strong, and work hard at being healthy as you can be with this disease.

I went to TWO doctors (my primary, who saw a slight abnormality on my EKG and referred me to a cardiologist), was misdiagnosed ZERO times, and had been living with symptoms for MAYBE A YEAR before being diagnosed with pulmonary hypertension (completely my own fault, BTW - I put off going to the doctor). The most difficult thing about trying to get my diagnosis was ... IMO, NOTHING. When I passed out on the treadmill at the cardiologist's office, he *immediately* ordered a left heart cath - when that didn't show a problem, he went ahead and did a right one. Tada! I feel very fortunate that my cardiologist was familiar enough with PH to be willing to look for it!

My child was seen once and after batteries of tests in a week while in the hospital, diagnosis was confirmed.

My PCP did tests, then sent me to a pulmonologist, who did more tests, then sent me to a cardiologist, who did a RHC. My pressure was 74. It took about 6 months to get it diagnosed. I just hate the shortness of breath so much. I've had no other symptoms other than that. My cardio doctor said a lot of people with SOB have PH but they and their doctors are just not aware it exists. People think you aren't ill because you look fine...which is frustrating.

I was pretty lucky my GP listened to my heart and sent me for an echo right away, the respiratory doctor picked up on it as well, but it takes ages to sort out. I've been waiting five and a half months for people to get off their rear end and actually help. All it is now is all talk, my doctor has tried her best sending me for tests but no one seems to want to know about it especially since I also have long qt syndrome.

Awareness Month Victories: Feed Them and They Will Come!

Tue, 22 Nov 2011 21:36:29 GMT

The pulmonary hypertension community is spreading the word about PH in ways large and small! Check out some of the fun, creative ways PHers are raising awareness this November.

Mike McAdams says: "Quick and fun way to share info at work! I put a poster and treats out for Halloween by my desk and as people took candy they would see the PH information." The old adage "feed them and they will come" is true! Check out his desk display to the right

The Caparra Wellness Center PH Support Group in Puerto Rico organized education and outreach at their regional mall, the San Patricio Plaza Mall. Check out the fun slideshow scrapbook of the event!

Melanie Kozak broadcast the following message to her followers on Twitter: "Do you want to know what Pulmonary Hypertension feels like...try breathing through a straw!" She says she got a lot of retweets out of it, so feel free to borrow Melanie's idea and share with your Twitter and Facebook friends.

Support groups around the country are holding all types of Awareness Month events, from galas and fun walks to local awareness support group meetings. The support group in Fort Wayne, Indiana held a PH party at a local Italian restaurant. At the event, PHA Volunteer Services Director Debbie Castro spoke about PHA patient and caregiver programs and about how group members can get involved in the movement to find a cure. Over three dozen patients and caregivers attended the party, including several newly diagnosed patients and a member of Generation Hope, PHA's virtual support group for young adults with PH. (see photo of meeting facilitator and nurse Amanda Lutter right)

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Record Attendance at Early Diagnosis Research Webinar

Mon, 21 Nov 2011 19:44:04 GMT

As part of the American Thoracic Society's Pulmonary Hypertension Week, PHA hosted a webinar with leading experts in the field on "Improving Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry." Drs. Gregory Elliot, Vallerie McLaughlin, Lynn Brown, Richard Channick and David Badesch presented groundbreaking data from the REVEAL Registry about trends in PH patient care. The event brought together 119 patients, caregiver and medical professionals, making it the most attended webinar in PHA Classroom history.

The doctors presented research that suggests that despite a range of available therapies, patients in the United States still experience significant delays in diagnosis. They discussed the need for early diagnosis of PH and more of the latest research from recently released white paper entitled, "PAH: Recommendations for Improving Patient Outcomes."

Missed the live webinar? You can watch the recording in PHA Classroom.

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Heart Rate Recovery Predicts Clinical Worsening in Pulmonary Hypertension

Mon, 21 Nov 2011 17:15:27 GMT

11/18/2011 (EurekAlert) - Heart rate recovery at one minute after a six-minute walking distance (6MWD) test is highly predictive of clinical worsening and time to clinical worsening in patients with idiopathic pulmonary arterial hypertension (IPAH), according to a new study. Read article

Awareness Month Victories: Local, State and National Proclamations across the Country

Fri, 18 Nov 2011 21:03:00 GMT

PHers garnered proclamations declaring November Pulmonary Hypertension Awareness Month in localities and states across the country. A couple groups even got citations from their Members of Congress. Check out the list of proclamations we've gathered so far and the PHers who secured them.

*Where (alpha by state)*	*Garnered by*
State of Arizona	Joy Gore
Diamond Bar, Calif.	Angelique Alcala
State of Florida	Al Abram
Cocoa, Fla.	Michelle Holden
Jacksonville, Fla.	Michelle Holden
Melbourne, Fla.	Michelle Holden
Miami, Fla.	Michelle Holden
Orlando, Fla.	Michelle Holden
Palm Bay, Fla.	Michelle Holden
Vero Beach, Fla.	Michelle Holden
Council Bluffs, Iowa	Joshua Griffis
State of Maryland	Nicole Cooper and Alex Flipse
Takoma Park, Md.	Alex Flipse
Montgomery County, Md.	Alex Flipse
State of Minnesota	Lois Piper
State of Nebraska	Joshua Griffis
Bellevue, Nebr.	Joshua Griffis
Omaha, Nebr.	Joshua Griffis
Papillion, Nebr.	Joshua Griffis
State of New Jersey	Tara Suplicki
Clifton, N.J.	Melanie Kozak
Passaic County, N.J.	Melanie Kozak
Secaucus, N.J.	JoMarie Bennet
Thomasville, N.C.	Janet Cecil
State of Pennsylvania	Merle Reeseman
Allentown, Penn.	Lehigh Poconos PH Support Group
Lehigh County, Penn.	Lehigh Poconos PH Support Group
Northampton County, Penn.	Lehigh Poconos PH Support Group
Pike County, Penn.	Lehigh Poconos PH Support Group
State of South Carolina	Meg Horne
Easley, S.C.	Meg Horne
Greenville, S.C.	Meg Horne
Spartenberg, S.C.	Meg Horne
Spartenberg County, S.C.	Meg Horne
State of Tennessee	Barbara Thompson
Bartlett, Tenn.	Barbara Thompson
Shelby County, Tenn.	Barbara Thompson
State of Texas	Michael Rivera
Corpus Christi, Texas	Michael Rivera

*Legislative Representative*	*Garnered by*
Congresswoman Ann Marie Buerkle (N.Y.)	Sarah Smiles Fun Walk
Congressman Charles Dent (Penn.)	Lehigh Poconos PH Support Group
State Sen. John A. DeFrancisco (N.Y.) (citation)	Sarah Smiles Fun Walk

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Advice for Those Newly Diagnosed with Pulmonary Hypertension from Those Who've Been There

Fri, 18 Nov 2011 20:41:00 GMT

We asked people living with pulmonary hypertension to finish the following sentence: "If you're newly diagnosed with pulmonary hypertension, my best advice to you is..." Here's the advice the PH community had to offer.

Don't let it define you just continue to be who you are

Don't give up there is a lot of different drugs that can prolong your life, and most of all stay strong

To stay positive

Read as much as possible about the disease. You don't want to be blindsided by anything.

live your life the way you have; don't let the pulmonary hypertension run your life.

SEE A SPECIALIST ASAP!!

Don't give up hope. With new advancements they may find a cure or better treatment. And always know I love you!!!!!!!!!!

Find a specialist who keeps apprised of your situation and learn about the disease. Also, listen to your body; everyone is different and reacts differently.

First off, find a doctor that knows about your situation and work with them closely. Find out what to expect and you may find a drug that can help and make things better for you. Second, surround yourself with loved ones. They can always give you the encouragement you need when times are at its roughest. Third, be you...stay strong, eat right, and things will work out just fine. Trust in yourself!

Enroll in a Pulmonary Rehab program immediately!! You'll learn a lot and get in better respiratory shape.

Get the best doctor you can; mine is at the Cleveland Clinic. Adapt the physical things that you must change, but NEVER give up hope, and try to live your life fully every day. You are so much more than just this disease! Don't see it as an eminent death sentence; I am still going stronger than ever and it's been 10 years now. Live and be strong!!

Join a support group! The knowledge you will gain from others is tremendous. Take you, your caregivers and your family. Keep informed on advancements. Stay positive and strong. And as Melissa says, "See a specialist, ASAP".

Journal to keep track of your feelings, info you are given or learn, and anyone you talk to like insurance reps and doctors. Learn as much as you can and speak out about PH because not much is known about our 2nd blood pressure by the public you will have to deal with. So be aware (learn) and share (talk out). Remember that PH research has come a long way so there is hope for everyone.

Don't ever give up! Do not let your disease define who you are. Stay positive and live each day to the fullest!

Be your own advocate, learn to listen to your body. And never, never give up hope!

Learn as much as you can about the disease. Join PHA as they are a great resource for information and give wonderful support to patients, family, and caregivers. Live life to the fullest!!! Never give up and FIGHT!!!

Get thee to a PH CENTER to be treated by an experienced doc that treats many other PH patients and participates in clinical trials.

Ask lots of questions, don't be afraid to talk about it, and MOST important...Don't give up hope!!!!!

Forget every statistic you hear! And remember: you have the disease; the disease doesn't have you! Talk to other PHers!

Don't think that it is going to control your life, you're in control of your life. Live every day to the fullest.

A healthy mind is just as important as a healthy body. Don't try to be a superhero, it's ok to break down and when you do just pick yourself back up. Remember always that it's a fight that you're capable of winning. Don't give up.

Attend a meeting! Find the closest PHA conference or support group and ask as many questions as you can. Talking to others with experience is the best therapy.

Learn all you can as soon as you can, and don't be afraid to think "outside the box."

Surround yourself with a good support system of patient people. And I mean patient in every sense of the word.

Get ahold of a PAH Doctor immediately. Educate yourself. Knowledge is key. Friend other PAH-ers. Live your life to the fullest. Don't lie down and let the disease succumb you. Take the bull by the horns!

Log onto the PH Association website to find a support group in your area or find PH friends through the association helpline! Another vital tool is the PH Association Pulmonary Hypertension Survival Guide handbook. Don't try to read it cover to cover, but use it as a reference. It is an easy read, but lots of useful information! Give yourself time to adjust to the diagnosis. Wait on making major decisions for a while.

Find a specialist....and then educate yourself as much as possible. If possible, go to the Conference which is held every two years. There you will find a wealth of information.

Thank you all for your input on this. My mother was just diagnosed with PH in early October. There is so much info and we are trying to get through reading it all!

Don't make rash decisions and get ready to make tons of calls.

Take a very deep breath and concentrate on the positives in life exactly as it is! Then get to a research center and get yourself the best care possible!

Take care of yourself and let people you love help you do that.

this is doable...don't give up before you even start the fight!

Read the Pulmonary Hypertension Patient Survival Guide and ask your family and close friends to read it as well. It is important for you as a patient to ask questions of your doctors and PH specialists and it is also important for people close to you to educate themselves about PH. Find a support group near you, go to conferences and use the PHA website for the great resource that it is. You aren't alone. Knowledge is power!

Life is full of surprises: Mom was diagnosed 3 months ago she wish she could shake it off like a bad cold or like when she had cervical cancer after giving birth to my sister 30 years ago, or when she had a 17 -19 hour surgery to her jaw implants due to a robbery and it hasn't been easy she has bad and good days: we have learn to accept the illness, we won't allow for it to control us or her learn to live a day at a time and if she's tired rest if it's a good day knock yourself out!

Learn everything u can about it so you're not afraid. ask all the questions tell u understand it. join a ph grp it's the best support system 4 u and ur family. join pha so get the latest info on all medical treatments. then live life 2 the fullest each day u can so theres no regrets!

Get thee to a PH Specialist that treats many PHers of all ages.

to not worry, work closely with your doctor and talk with others who have PH.

Make sure you have some kind of support system...family, friends, neighbors...You will need them!! Let them help when they offer. They love you and are feeling helpless as well for you. You truly find out who your precious angels on earth are!!

Seek out a PH center....this is no common cold you are dealing with- go find the Best PH doctor even if it means traveling!

Research!!!

Hang in there and keep your faith. You are not alone.

Find a great doctor who knows what the disease is and how to treat it. There are lots of treatment options out there and more and more being researched, a great doc will help you decide which is best for you.

You will not be defeated!

Find a PH specialist ASAP. Go to phassociation.org and use the find a doctor link. Then order the survival guide.

Find a Doctor that treats PH. Check their credentials, how many patients he has and how long has he been treating patients with PH. Educate yourself about your disease. Be sure to ask any questions you need answered. Most important, be your own advocate.

Take it day by day. Always remember that you are not alone in fighting PH. You will have days that are bad and days that are good but always remember it takes one person to fight and that is "you"!

Ignore statistics and stay positive.

Stay off the Internet!

Don't get stressed (emotionally or physically). Stress worsens symptoms more than anything else. I am still learning how to let go of stress and anxiety. They are killers! (Easier said than done for some, I know.) I hope that more people understand this disease and especially those that are in your life, (makes for better coping on a daily basis, and that works both ways.) For me, anyway, if someone understands what this illness is etc... I am able to relax, better. Thus, understanding what others might feel like living with or knowing someone that has Pulmonary Hypertension.

Live Life to the Fullest...Be positive

take each day at a time work with doctors closely know all you options.

Having a great caretaker is a major help, stay positive and go about your life, there is no cure but it is very treatable, and the right medication can change your life! I am so thankful for my doctor and those around me, this is just something new you have to live with, and the world isn't going to end ; D

Keep living life to the fullest and do not ever give up hope.

Take one day at a time...Just breath.. Diagnosed Jan. 7th 2002 My 10 year Anniversary coming up!!!

Stay calm...don't freak out and immediately assume the worst. Focus on the word treatable. Find a specialist and go to them.

Stay as positive as you can and remember that with hope anything is possible.

See a PH specialist. Do not panic and do not believe everything you read or hear about PH.

Get with a support group and ask them questions. Finding people who have been living well with PH will help you stay positive.

Educate yourself so you can assist in your treatment.

ALL OF THE ABOVE! Educate yourself on PH every chance you get. My son's local lung dr told him that my son knew more than his own dr about PH. Be positive.

Take it day by day, and remember life is still what you make it ♥

Find someone to be your PH mentor

Awareness Month Victories: Pulmonary Hypertension Awareness on the Today Show!

Thu, 17 Nov 2011 20:55:17 GMT

PH patient Maria Martuccio brought her family and friends to Times Square to be a part of the audience at the Today Show. Donning purple wigs and PH awareness tees, they were seen on the show with their various PH awareness signs. The Today Show reaches millions! Way to go Martuccio family and friends!

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

New Date: PHA’s Patient Telephone Support Group!

Thu, 17 Nov 2011 19:03:58 GMT

Sometimes the holidays are stressful times. It always helps to have someone else to talk to, someone who understands what it's like having pulmonary hypertension. Want to chat with another patient? Can't make it out to a local support group meeting? PHA's patient telephone support group reaches out to those who can't make it to local meetings, whether because of health, work hours or distance. We usually meet on the 4th Thursday, but due to Thanksgiving, we'll be meeting on a Tuesday.

PHA's Patient Telephone Support Group

When: Tuesday, Nov. 22, 8 p.m. ET

Where: On the phone and online. The web portion is optional. You must dial in to participate. Details will be provided after you register.

Awareness Month Victories: Events, Events, and More Events!

Wed, 16 Nov 2011 22:33:45 GMT

Our community continues to spread awareness and raise funds for pulmonary hypertension at Special Events around the country. Thank you to all the event organizers and volunteers who put in so much work to make these events such a success, and a whole lot of fun!

5th Annual North Texas Fun Walk – With their largest attendance yet, the fun walk included a 5k fun-run in addition to their traditional 1-mile walk. Dr. Kelly Chin and PHA Volunteer Services Director Debbie Castro spoke to the crowd during lunch, and participants could purchase raffle tickets for some amazing prizes – a flat-screen TV, digital camera, Dallas Cowboy autographed football, board games and toys. (group pictured right)
Inaugural Orlando PH Chili Cook-Off & Bake Sale – The Orlando PH Support Group raised well over $4,000 at their inaugural event! Besides some great food, they heard from Dr. James Tarver about PH, a great awareness opportunity for their community, but particularly for the newly diagnosed patients in attendance. (young attendee pictured below right)
Omaha, Neb., Phenomenal Hope for a Cure Brunch – Carol Lindstrom and the "Periwinkles" gathered about 160 attendees for some good eats and great fun. Guest speaker Colleen Brunetti received a standing ovation after sharing her story and message of hope.
4th Annual South Florida PH Fun Walk – Spearheaded by Pat Hellyer and the South Florida PH Support Group, this event had about 75 attendees, and all the PH patients present were honored during the lunch after the walk.
Greater Saint Louis Area PH Dinner and Wine Tasting – In addition to the good food (seems to be a theme with our events), the 175 participants at this event organized by Amanda McKee were treated to talks by Dr. Murali Chakinala and PHA Board of Trustees Chair Laura D'Anna.
2nd Annual J. Patrick Garcia Breathe Easy 2011 – Over 120 people gathered in Albuquerque, N.M., for this 5k fun run/walk then gathered for a mix and mingle after the race. (group pictured below)
Vision of Hope Gala – Dinner, dancing, a fashion show, and compelling speakers... what more could you ask for? This gala in the Baltimore, Md., area was packed with 200 partiers, who were also educated about PH and what it is like to live with PH by guest speakers Dr. Myung Park, Betty Lou Wojciechowski and Vern Gore.

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: PHA Facebook Community Grows to 5,000 PHriends!

Tue, 15 Nov 2011 21:43:25 GMT

PHA's Facebook page is now reaching over 5,000 PHriends. Join the conversation if you haven't already! Follow PHA on Facebook

Then click on the Take Action section on the left to ask your Members of Congress to support the Tom Lantos PH Research and Education Act in solidarity with your fellow PHers who were up on Capitol Hill today for PHA's Annual Congressional Luncheon.

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Hundreds Contact Their Members of Congress!

Mon, 14 Nov 2011 22:16:37 GMT

The Cincinnati Tri-State (OH/KY/IN) PH Support Group gathered 379 letters from their group and at an awareness table event at The Christ Hospital (pictured right) to send to their Members of Congress asking them to support the Tom Lantos PH Research and Education Act.

Representative Joe Wilson spoke on the House of Representatives floor about Pulmonary Hypertension Awareness Month on behalf of the PH patients in his district in South Carolina.

PHA's Annual Congressional Luncheon is taking place tomorrow. Invite your Members of Congress now! Your calls matter!

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: PHer Recruits All His Members of Congress for Congressional Luncheon

Fri, 11 Nov 2011 22:52:50 GMT

George Harris, a PH patient in Connecticut, invited his two senators and his representative to PHA's Congressional Luncheon this upcoming Tuesday and all three RSVP'd. Representatives from the offices of Senators Joseph Lieberman and Richard Blumenthal and Representative Chris Murphy from Connecticut plan to attend. Way to go, George!

Your calls matter! Invite your senators and representative to this free event where they'll learn more about PH and how they can help. Send an invitation

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

What Pulmonary Hypertension Feels Like

Thu, 10 Nov 2011 20:25:00 GMT

We asked people living with pulmonary hypertension to finish the following sentence: "Pulmonary hypertension feels like..." We heard back from people young and old about what PH feels like.

Editor's personal favorites:

An elephant sitting on your chest.
the best dang excuse to play video games I've ever had :D

Pulmonary hypertension feels like...

Prison

a very bad dream...

a death sentence.

drowning

An opportunity to help others with the same disease

nightmare

it's not fair!

Nothing more than an inconvenience and an obstacle to overcome!

An elephant sitting on your chest.

a challenge that does not and will not stop me.

Bitter sweet...

Life changing that I don't want.

A huge eye opener that life is very precious & too short!

hell at times!

My life has been taken away from me.

a never ending obstacle course! I won't let it take me down though!

A jail sentence!!!

You're wrapped in chains with a big ole padlock just out of reach!

A God-given test, and I'm not going to fail it!

A death sentence!!!! My life is gone!

well if my son could talk I think he would say it's my life (he is 4 years old )

There is a band wound tightly around my chest which will not allow my lungs to expand.

Something is strangling my lungs, so I can't breath

It's taking so much from my son

PAH feels like drowning in my own "lung juices".

Don't want to speak for my daughter (she's 12), but I'd say her PH diagnosis (though a major shock - she was 6 at the time) was an opportunity to trust in God's providence. We have met a lot of wonderful people through the PH community and CHOP, where she is treated. We have also witnessed the amazing power of prayer. My daughter almost died earlier this year, but she is alive and doing well - she is a true miracle.

the best dang excuse to play video games I've ever had :D

being in prison with your own body....

PAH feel like my number one reason to fight harder.

Shit!

special god chose me to have it and be a part of the cure process

life is very special & I'm going to enjoy every second while I can.

Nothing inside me. I'm screw

a daily challenge to work past and enjoy the day. And every morning, wake up and thank your God, that you have another day to enjoy.

Never getting enough air into your lungs.....Yes, it is being in prison with your own body...

I am someone sitting on your chest 24/7 it's not fair, I cry a lot.

frustrating!

The oxygen is an inconvenience; I am willing to live with that! It's been 10 years now - I will never give up

E) all of the above. :(

Yes...all of the above!

La vida va mas rapido de lo que yo desearía

‎...a battle to win my life back. And I WILL WIN!

I do not have PH but here is what [my daughter] (9yrs PHer) said last night... "Mom I do not want to die.. I do not like being different from my friends, I do not like being too tired to play the games my friends play, I do not like the shots, My bandage itches, I have pains in my chest, My shoulders are achy (from I.V. back pack), Why do I have to take so many pills, I wish my stupid pump was gone, I am just tired of not being NORMAL :(" This was on a good night.

Is nothing I ever imagined but has taught me a lot about myself, tested my faith and strength but I stand tall, it constantly knocks me down but I always get back up....so to you all let's embrace this struggle and help each other overcome it....stay blessed positive and strong XOXO

[name removed for privacy] I love your comment I was in your daughter's situation and almost died (I was 30) but through the power of prayer and being blessed with great doctors ... I'm still here and I'll be 32 on Thursday

Oh [name removed for privacy], that is terrible... These kids are way too young to endure this pain... I'm sorry, I hate this disease for all of us that live it on a daily basis. With all the new stuff coming out and being studied I Pray we find a cure... ♥ to u all!

I fought PH for 20 years and I am familiar with all these comments. 3.5 years ago I got a double lung transplant and am healthy now. I keep helping and praying for a cure. May you all be blessed.

My aunt was an inspiration. She had P.H for 6 years and she never once complained about it, even though she had a very poor quality of life near the end. She fought for her life every day, and yet would still ask how ru today? She still managed to enjoy every min of her life, and went on holiday and took her grandson out as often as she could manage! She helped shape part of the study trial combos do that others will have a better quality of life. I'm so very proud of her, and miss her every day! Live and love, that's what fights this terrible disease! Xxx

Like having something heavy on your heart and lungs

Wife tells me it feels like our six year old sitting on her chest all day long

Elephant on my chest! Days with cold winds are a b&*@ch!

carrying 25# with clamps tightening on your chest

With the oxygen, I feel like a Dog on a leash!!!

‎...just another challenge to overcome to show me what I'm made of.

Like I'm old before my time...I was 24 when diagnosed. I'm 30 now and I still look good....lol

A never ending burden

A reminder that life is precious and to enjoy every day that you have.

PH feels like one day it just came into my life and decided that it was going to stay!

My 16 yr old son would probably say annoying, since he has to stop what he is doing and take his neb

I'm going to get old too quickly and my young children will never understand why mom is truly sick and my husband will lose his last patience. I feel fine now - but I dread what the future brings.

PH will not control my life I vow to control my PH!

‎...I'm running a marathon nonstop. Trying to keep up with 4 little boys and the tornado that follows them...feels like I just ran a marathon and I'm going to run another tomorrow. Oh JOY! =D

An ongoing struggle but each day gets a little better!

Running up and down stairs for at least 10 minutes on an empty stomach with no sleep, and when you sit down to "rest and catch your breath" your heart pounds harder and as you're already sitting down, you still feel like you might pass out. It also feels like you're hyperventilating and sometimes that is a result (from trying to catch your breath) but it's really not "air" you're lacking it's oxygen.

It slows down everything u want to do, because you are too tired, too fatigued, and lack energy!

Someone asked is the cold weather worse?? for me it is yes. I struggle to breathe more, I get sick more often, I have this pain in my chest that will not go away, and it hurts all the time.

I am holding my breath and going about my life...never get enough air!

I am not as active as i should be

My Husband will say a constant challenge, but I know this has helped us appreciate how precious is life and enjoy as much as we can. He is a fighter and we will control it together.

trying to navigate through mud!

trying to breathe when someone is covering your mouth

running up stairs for 10 minutes after no sleep or eating (a weakened state) and then sitting down to catch your breath, (but it's not air you're really lacking, its oxygen) and your heart keeps pounding harder (even after you have sat down) and the more you breathe the more light headed you feel because it's like hyperventilating.

it feels like somebody sitting on my chest, it's just not fair...I get so upset sometimes...some people just don't understand...

I got hit by a bus and the flu times ten!

Crap!

I am carrying a ton of extra weight all the time (& I'm underweight).

against all odds.....

Something I can't describe it's horrible the way it Creeps up on u!!!

My worst enemy attempting to kick my ass, but I keep getting back up & fighting back. #WeAreFighters

the highest mountain ever that I will never get to the top, but one day I WILL!! I am the lil engine that could...

It wants to take over my life but I will not let it!

‎...my normal state of being now.

Kansas City News Alert - Tune In Friday Night on Fox

Thu, 10 Nov 2011 19:45:16 GMT

PHer Jim Gebhardt will be on Fox Channel Nightly News at Nine tomorrow, Nov. 11, discussing pulmonary hypertension in an interview with Health and Medical Editor Meryl Lin McKean.

Awareness Month Victories: Special Events Galore!

Wed, 09 Nov 2011 22:15:30 GMT

PHers around the country are holding special events to raise awareness and funds for the cause this Awareness Month. Event organizers work hard in November and throughout the year to plan great events, large and small. Thank you, event organizers! Here we highlight just a few from the past week. More to come!

before

after

Jack "the Ragin Cajun" Stibbs

Jack Stibbs, a PH parent and PHA board member, arm wrestled another attorney to raise awareness and funds for pulmonary hypertension last week. As Jack entered the arena, necklaces were thrown into the crowd with information about PH and Jack's upcoming crawfish event attached. Jack certainly got into the spirit with a fun wrestler costume (see right along with the before photo of what he normally looks like).

Pubcrawl in Baltimore

The "3rd Annual Pulmonary Pints: Pubcrawl for PH" was held this past Saturday, November 5, in the Federal Hill area of Baltimore, Md. The event attracted 115 beer-enthusiasts and PH advocates, and raised around $6,000 for research and programs. The event was organized by sisters Katy Hayes and Ashley Boehk in memory of their mother Katherine. Take a look at the T-shirts they wore for the pubcrawl to spread awareness to fellow pub patrons.

PHun Walk in Albuquerque

The "2nd Annual Abby's Road PHun Walk" took place this past Sunday, November 6, in Albuquerque, New Mexico. The event is held in memory of Sacha Blair and Frances Savage, and is named in honor of Sacha's daughter Abby. The event included a puppet station (photo right) and raffle.

TV Coverage in Omaha

Carol Lindstrom and Josh Griffis, who are both living with pulmonary hypertension, appeared on a local Nebraska television program, The Morning Blend, to educate the public about PH. They spoke about the need for early diagnosis, symptoms and treatment. They also told viewers about the "Phenomenal Hope for a Cure Brunch," coming up this Saturday. Watch video of TV coverage | Learn more and register for the brunch

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

Awareness Month Victories: Purple Pride and PH Week at ATS

Tue, 08 Nov 2011 21:10:12 GMT

Our victories this month are happening nationally and locally...

PH Week at the ATS

In conjunction with the Pulmonary Hypertension Association, the American Thoracic Society has a section on their website dedicated to pulmonary hypertension educating patients, caregivers and medical professionals. As part of this partnership week, PHA is presenting a webinar on Thursday – Improving Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry – a rare opportunity to hear from five of the nation's leading PAH physicians on groundbreaking data from the REVEAL Registry about trends in PAH patient care, the need for early diagnosis and other research recommendations. Register now

Mahwah High School Purple Pride

The mascot of the Mahwah High School football team in New Jersey is Vinny Accurso, an eight-year-old living with pulmonary hypertension whose brother Anthony is a player on the team. On Friday night the entire stadium wore purple to the game in support of Vinny and Pulmonary Hypertension Awareness Month. The community's show of support for Vinny and PH awareness led to two articles in the local Mahwah Patch: here & here.

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org

New Guidelines for Treating Pulmonary Hypertension and Venous Thromboembolism

Tue, 08 Nov 2011 13:20:23 GMT

11/4/2011 (URMC) - URMC doctor R. James White, M.D., Ph.D., helps establish new guidelines for treating pulmonary hypertension and venous thromboembolism. Watch the video

Awareness Month Victories: Minn. Proclamation and Sarah Smiles Fun Walk in the News

Fri, 04 Nov 2011 21:49:01 GMT

Your successes continue!

This Saturday, November 5, the Peek family is hosting the Sarah Smiles Fun Walk for PH in Camillus, N.Y. The event is named for Sarah Peek, who passed away from pulmonary hypertension in 2010 at the age of 7. Sarah's story was featured in the Syracuse, N.Y., Post Standard this Thursday. The article raised much-needed awareness about pulmonary hypertension, and included a quote from PHA's President Rino Aldrighetti who said of the Peek family, "They are our heroes." Read the article | Learn more about the event

Lois Piper successfully obtained an official proclamation declaring November 2011 as PH Awareness Month in Minnesota by Governor Mark Dayton. Way to go, Lois! See the proclamation right >>

We'd love to hear what you are doing. Tell us about your victories, large and small. Contact Diane@PHAssociation.org

Awareness Month Victories: Online Awareness, Proclamations, News Coverage, and More!

Thu, 03 Nov 2011 20:30:00 GMT

Pulmonary Hypertension Awareness Month is off with a bang! We're getting emails and phone calls from across the country about how members of the PH community are spreading awareness in ways big and small, truly demonstrating the Power of One, our 2011 Awareness Month theme! One woman told us that she passed out information about PH to trick-or-treaters with Halloween candy. Great idea! Here are just a few of the places that we've already made noteworthy victories:

Online. On November 1, PHers kicked off Awareness Month with PH Online Awareness Day, spreading awareness about PH through their online networks. Over 530 people RSVP'd for the event on Facebook alone.
In print. The Portland Press Herald ran a story about Ava LaBarge, a five-year-old living with pulmonary hypertension in Bridgton, Maine. Read the article
On television. PH patient Patty Kaiser was featured in the "Show Me St. Louis" segment on KSDK NewsChannel 5 on November 1. Patty raised awareness about pulmonary hypertension, the importance of early diagnosis, and the Greater St. Louis area Dinner and Wine Tasting, an event on November 12 that will raise money to support patient services and programs at PHA. Watch the video | Learn more about the event
Down at town hall...and the governor's office! PHer Alex Flipse didn't just get a proclamation declaring November PH Awareness Month from her local government in Takoma Park, Md. She also garnered one from Montgomery County and the state of Maryland. Kudos, Alex!

Keep up the great work, and let us know about your victories, large and small, so we can share them with the community! Contact Diane@PHAssociation.org.

Hear How PHers Felt When They Were Diagnosed

Thu, 03 Nov 2011 16:42:00 GMT

We asked people living with pulmonary hypertension to finish the following sentence: "When I was diagnosed with pulmonary hypertension...." We heard back from people young and old about what it felt like to hear that they had PH.

When I was diagnosed with pulmonary hypertension...

I was relieved to finally know what was plaguing me.

I thought what the hell is pulmonary hypertension?

I did a whole bunch of reading and praying.

I was overwhelmed! I was pregnant with my fourth child when I found out I had pulmonary hypertension. Everything for the next 2 months was dealing with the unknown and I spent all that time in the ICU. I had a lot of time to think while I was in the hospital; I was angry, sad, frustrated, and I guess even relieved to some extent. I had been telling doctors for years that I wasn't feeling right and finally I knew why. That also made me angry because if someone would have taken me seriously earlier then it wouldn't have gotten so bad before I was able to get treatment. Now I do the best I can and try to live each day to the fullest for my four boys.

I was glad to finally know what's wrong but angry that it wasn't something that could be "fixed."

I was overwhelmed with emotions that I had never experienced before.

I was upset. I thought they had fixed my heart with surgery but this was something they couldn't fix.

I had just turned 19 years old and was given 2 years to live. This was exactly 18 years ago! I was put on Flolan which was experimental at the time as a bridge to transplant. That bridge was very very long as I didn't need a transplant until 2007! I never let this crazy disease stop me! And I've led an incredible life!

I was angry because it was brought on by an accident during heart surgery but I got over the anger and am now thankful to God everyday for allowing me to wake up to have another wonderful day with my family and friends!

I was very angry, and upset that I wouldn't live to enjoy my grandchildren.

When I was diagnosed with PAH, I was feeling lots of emotions: sadness, shock, fear, but also relief (a diagnosis that "fits"). I have a reason for why I take all those meds and why I feel tired all the time, but look "normal."

I was confused. I was moved to ICU for the next 10 days and started on Remodulin. All I could think was I hope I live through this. That was almost 2 years ago. It's a great day to be alive!!!

I felt a little fearful at first, then glad of a diagnosis so I could get treatment. Mine is secondary to sarcoidosis. I am used to the "normal" look, but I'm glad I "look" better than I feel sometimes. I'm THANKFUL!!!

I cried thinking I would never know my future grandchildren.

I knew I was SOB (short of breath), but had never heard of pulmonary hypertension. Initially I was upset, and then started reading. That reading scared me up front - I would stop and not read for a few days, then pick it back up. I've always had bad asthma and allergies, so I thought it was getting worse.

I was relieved to finally know what was wrong with me. Now I knew what we were dealing with after a string of mid-diagnoses. I am blessed with a wonderful support system and a terrific medical team. I have good days and bad but the good far outweigh the bad. Every day is a gift and I have learned to take nothing for granted. Sending prayers out to all who are affected by this horrible disease!

I was excited to finally have an accurate diagnosis and get on medication. I was passing out for 9 years and it all stopped once I began treatment. It was horrible to have something wrong with no relief for so long. Relief came in the form of a big blue pill! :)

I was so angry at every doctor that ever missed the heart defect I was born with, I could have screamed! (I was 57 when my cardiologist discovered it.) I have secondary PH because of that defect. But now I'm on oxygen, Adcirca, and Letairis and feeling pretty good most days. I go to pulmonary rehab twice a week, working out on the equipment there and have met so many friends there, with so many different lung problems. We all watch out for each other there and keep tabs on one another when one of us is out for a couple weeks or more. We actually have fun and our nurses are terrific! Here's hoping they find better treatments soon!

I was 16. I was overwhelmed, because I didn't know what was going on. I kept asking my mother about the mysterious thing the doctor had found. My mom said, "Pump medicine will make you feel better." I didn't understand why, but a few months later, my mom told me the truth—that it was a rare disease called pulmonary hypertension. I was disappointed, but I'm glad to have treatment for 10 years keeping me alive. I am happy and smiling.

I cried. I knew PH was what my mother died from in 1992. It was 2003, and I was put on Flolan, Tracleer, and then eventually Revatio. I was also listed on the transplant list that same month. I waited 8 years for a transplant. I received my transplant in June of this year.

I was told I wouldn't see my 30th birthday. In 17 days I'll be 30.

I was 26. Working full time, carrying 6L of water throughout my entire body, in congestive heart failure and days away from not being here on this earth. Thanks to Flolan and my awesome PH doctors, family, friends and all the hope and support from fellow PHers, I'm still able to live life!

I was only 7 but knew something was wrong since birth. I didn't understand anything and was really brave.

And that was I wouldn't see my 30th without double lung transplant....But I haven't needed transplant yet, and my pressures are dropping on treatment.

I didn't understand what PH was and was so happy that the doctor did not find anything wrong with my heart that I cried tears of joy at that moment. Then I found out what PH was and then the side effects of PH began to manifest more and more that's when I realized that it was serious.

I thought how can they keep me alive long enough to see my baby grow. Thankfully I have treatment that is prolonging my life.

I was thrilled. I thought, OK -- now that they know what it is, they'll fix it and I'll be well. Little did I know....

I was clueless about the reality that is PH. I'm truly thankful for my healthcare team, PHAssociation.org and my PHriends...each have educated me, cared for me and walked with me through this journey so far.

I thought I would not survive long. (More than 10 years ago now!)

I was told I would be dead within two years. I was just devastated.

My world went black for an instant then my faith in God came shining through. Now it's 13 years later and I'm still kickin', thanks to Flolan and an awesome doctor and his staff and most of all thanks to GOD!!

I came home from the hospital and I saw all of those discouraging comments on the internet telling me I would be dead within one to three years. It now has been five and a half years and I am still alive. Thanks to Duke Medical Center, I am stable and have gone back to school to finish my coding degree.

It was Christmas Eve 2004 and it hit us all hard. Hubby was planning retirement, we were about to book the trip of a lifetime for 3 months overseas and I was told NO travel in the foreseeable future. Our world was turned upside down in one minute. Here I am nearly 7 years on and stable thanks to fantastic specialists, PHA, PHA Australia and PHA UK.

Blue Lip Ladies Video

Thu, 03 Nov 2011 16:05:00 GMT

11/1/2011 (KSDK) - The 2011 PHA Dinner and Wine Tasting Fundraiser is on Saturday, November 12, at 5 p.m. at the Sunset Lakes Golf Club, St. Louis, Missouri. Watch the KSDK News video | View more information in the PHA Events Calendar

Bridgton Girl Fights Ailments With a Smile

Thu, 03 Nov 2011 16:00:32 GMT

11/2/2011 (The Portland Press Herald) - Five-year-old Ava LaBarge has been through a lot, but you wouldn’t know that from the smile on her face. Spinal surgery, four brain surgeries, a stroke – the Bridgton girl has suffered them all. Among a slew of conditions, young Ava has chronic pulmonary hypertension. Read article

Joint PHA/ATS Webinar on Groundbreaking Data from the REVEAL Registry

Thu, 03 Nov 2011 11:11:00 GMT

Improving PAH Patient Outcomes and Early Diagnosis: An Examination of the REVEAL Registry
Thursday, November 10
3:00 p.m. ET
Webinar (phone AND web)
Register now

Join five of the nation's leading pulmonary arterial hypertension (PAH) physicians on Thursday, November 10, as they present groundbreaking data from the REVEAL Registry about trends in PAH patient care. This research suggests that despite a range of available therapies, patients in the United States still experience significant delays in diagnosis. Panelists will discuss the need for early diagnosis of PAH and more of the latest research recommendations to improve patient outcomes.

This Pulmonary Hypertension Awareness Month webinar is a partnership between the Pulmonary Hypertension Association and the American Thoracic Society in recognition of Pulmonary Hypertension Week at the ATS, November 6-12. The presentation is open to all, but will be of special interest to medical professionals and PAH patients and caregivers.

The REVEAL Registry is a multicenter, observational research study of PAH patients. Over 3,500 patients are enrolled in the U.S.-based registry, making it the largest PAH study in the world.

Register now!

Nov. 1 is PH Online Awareness Day!

Tue, 01 Nov 2011 14:02:08 GMT

Get Involved in PH Online Awareness Day on November 1

Kickoff Pulmonary Hypertension Awareness Month from your computer on November 1! Spread the word about pulmonary hypertension to your friends, family and the world on Facebook, Twitter, your blog or via email. Share your story and facts about pulmonary hypertension with your online networks, and encourage them to share or repost to their networks.

Some ideas to get you started:

RSVP for the Awareness Day Facebook event
Mention pulmonary hypertension in your Facebook status or repost messages from PHA's Facebook page
Tweet about pulmonary hypertension: #PHAware
Email your friends and family with information about pulmonary hypertension
Submit your story to PHA through the Our Journeys program or share it on your blog

PHA Makes Online Awareness Easy!
Carry the momentum of Awareness Day throughout Awareness Month in November and all year round by making regular posts. You can find ideas by reposting messages from PHA's Facebook page or Twitter feed.

Join the PHA Online Messengers email group to receive regular messages to share with your online friends

Learn more about how you can Fight for the Cause Online

UK (University of Kentucky) Healthcare Surgeons First to Perform Novel Procedure for Transplant Patient

Mon, 31 Oct 2011 14:43:50 GMT

10/29/2011 (KyForward) - The patient “feels like a miracle,” after surgeons at UK HealthCare recently became the first ever to perform two specific procedures together as a bridge to lung transplantation. Read article

CHEST: Study Looks at Sildenafil Dose for Youth With PAH

Mon, 31 Oct 2011 14:40:43 GMT

10/24/2011 (Doctors Lounge) - Medium doses of sildenafil may be beneficial for children with pulmonary artery hypertension, according to a study presented at the annual meeting of the American College of Chest Physicians, held from from Oct. 22 to 26 in Honolulu. Read article

FDA Drug Safety Communication: Sprycel (dasatinib) and Risk of Pulmonary Arterial Hypertension

Mon, 17 Oct 2011 13:29:20 GMT

10/11/2011 (FDA) - The U.S. Food and Drug Administration (FDA) is warning the public that the leukemia drug Sprycel (dasatinib) may increase the risk of a rare, but serious condition in which there is abnormally high blood pressure in the arteries of the lungs (pulmonary arterial hypertension [PAH]). Information about this risk has been added to the Warnings and Precautions section of the Sprycel drug label. Read article

A Vision of Hope: Awareness Month Gala to Benefit PHA

Fri, 14 Oct 2011 14:46:10 GMT

On November 12, the Vision of Hope Gala will take place in Baltimore, Md. This festive event, featuring speakers Dr. Myung Park (University of Maryland) and Betty Lou Wojciechowski (former member, PHA Board of Trustees) will raise research dollars to benefit PHA’s extensive Research Program. A silent auction, raffle, dinner & dancing and PH-themed fashion show will also be featured.

Join us! Tickets are available for purchase online or by phone at 443-677-3729. PH patients and caregivers - $50. All others - $100. We do have a number of complimentary tickets available to patients and their caregivers! If interested, please email Events@PHAssociation.org or Nicole at schlease@hotmail.com.

Hope to see you there!

No Need to Perfuse Brain in Pulmonary Endarterectomy

Fri, 14 Oct 2011 14:37:36 GMT

(MedPage Today) - During pulmonary endarterectomy for chronic thromboembolic pulmonary hypertension, continuously maintaining brain perfusion provides no advantage in cognitive function compared with periods of deep hypothermic circulatory arrest of up to 20 minutes, a randomized trial showed. Read article

Teen in Virginia Lobbies for Transplant Education Law

Fri, 07 Oct 2011 18:05:41 GMT

10/06/2011 (NBC 29 WVIR) - Organ donation is a cause very literally close to Madison Shinaberry's heart. The Harrisonburg teen received a double lung transplant in 2009, and Thursday she's lobbying state legislators to pass a law encouraging more donation and transplant education for high school health students. Read article and watch the video

Molecules to Medicine: Clinical Trials for Beginners

Fri, 07 Oct 2011 17:57:37 GMT

(Scientific American Blogs) - From the Guest Blog entry: "Have you ever wondered about the medicines you take—how they are developed and produced? We’ll explore that in “Molecules to Medicine.” This new series could be described as “medicine for muggles,” intended to take the mystery out of clinical research and drug development and to provide background information so that both patients and physicians can make more informed decisions about whether they wish to participate in clinical trials or not." Read article

Caregivers’ Stress Leads to Unhealthy Habits

Thu, 06 Oct 2011 21:23:19 GMT

10/2/2011 (HealthyCal) - Craig Sheffer, 52, of Santa Rosa knows, professionally and personally, about the stresses of caregiving. As the father of an 18-year-old daughter with severe pulmonary hypertension, Sheffer has learned how to cope with the intensity and demands of caregiving. Read article

Making a difference...

Wed, 05 Oct 2011 14:43:50 GMT

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary

Making a difference...

In recent years, our friend Hall Skara has been building PHA Norway into an effective voice for pulmonary hypertension patients in his country. It's a great effort in a nation where there are not many diagnosed patients.

On September 25, PHA Norway held their national conference. the event generated good press coverage and and the 11:30 minute TV interview below. Many thanks Hall for subtitling the interview in English!

I really enjoy blogging about PHA Norway. They are a great example about how even a small community of patients, family members and medical professionals can make a difference.

Learn more about how PHA Norway got started and about the international PH community.

Women with Pulmonary Arterial Hypertension Have Greater Response to Treatment than Men, Penn Study Finds

Fri, 30 Sep 2011 17:56:00 GMT

9/27/2011 (Penn Medicine) - Pulmonary arterial hypertension (PAH) patients of different sexes and races may respond differently to treatment with commonly used medications for the disease, says a new study from researchers at Perelman School of Medicine at the University of Pennsylvania.The results of the study are published online ahead of print in the journal CHEST. Read article

Sildenafil Appears safe and Effective for Eisenmenger Syndrome

Tue, 27 Sep 2011 15:32:38 GMT

9/23/2011 (Heartzine) - In a study published by the journal Heart, researchers based in China led by Professor Zhi-Cheng Jing of Tongji University School of Medicine report that over a 12 month period, sildenafil treatment (oral administration) for those with Eisenmenger syndrome (a shunt-related congenital heart defect which leads to PH) was both well tolerated and appeared to improve key performance measures. Read article

Novartis Study Shows QTI571 Significantly Improved Walking Distance in Patients with Life-Threatening PAH

Tue, 27 Sep 2011 15:16:54 GMT

9/26/2011 (Pipeline Review) - Novartis announced new data today from the pivotal Phase III IMPRES clinical trial showing that the investigational therapy QTI571 (imatinib) significantly improved exercise capacity in patients with pulmonary arterial hypertension (PAH) after 24 weeks compared with placebo(1). Evidence indicates that QTI571 targets an underlying cause of PAH by counteracting uncontrolled growth of arterial smooth muscle cells(2). Read article

Denver-area PH Run for PHun a Huge Success; Hundreds Involved

Fri, 23 Sep 2011 17:06:54 GMT

30 walk teams. 400 registered. 28,305 PH research dollars raised by PH patients, walkers, runners, family and friends for the Colorado PH Run for PHun on Sept 18. Thanks to our Colorado “PHriends” for bringing all of us one step closer to a cure!

The walk itself was preceded by a flurry of media activity in the Denver area, including two local television spots that featured stories from both children and adults living with PH. PHA Scientific Leadership Council member, Dr. Ivy and Scientific Leadership Council Distinguished Advisory Committee member, Dr. Badesch, played a role in both spots:

Channel 7 News - 11-Year-Old Lives With Pulmonary Arterial Hypertension. View now

Fox News 31 - Highlands Ranch woman raising awareness of pulmonary hypertension. View now

Estrogen Treatment May Help Reverse Severe Pulmonary Hypertension

Mon, 19 Sep 2011 19:04:02 GMT

9/15/2011 (eurekalert) - UCLA researchers have found that the hormone estrogen may help reverse advanced pulmonary hypertension. Published in the Sept. 15 issue of the American Journal of Respiratory and Critical Care Medicine, the preclinical study shows that in rats, estrogen treatment can reverse the progression of pulmonary hypertension to heart failure and can restore lung and ventricle structure and function. Read article

PH patient in South Africa: "I'm being given a second chance at life"

Wed, 07 Sep 2011 21:26:57 GMT

9/6/2011 (Independent Online) - Everyone should meet Tina Beckbessinger. She is an absolute inspiration. At 30, when most women are looking forward to a full and healthy life, Tina has only a single mission - to remain strong enough to undergo a heart-lung transplant. Tina hopes by sharing her story to increase awareness surrounding organ donation in South Africa and in particular, the critical shortage of donors. Read article

Get Tips on How to Explain Your PH

Tue, 30 Aug 2011 14:43:17 GMT

Telling Your Story: Explaining PH to Friends, Family and Coworkers
Thursday, September 1, 6:00 p.m. ET/3:00 p.m. PT

Join us on this webinar as Amanda Harvey-McKee and Brit Riggins share their experiences with telling their PH stories. They will discuss tips for helping others understand PH whether they be family members, friends or coworkers and strategies for explaining limitations and communicating about PH. Please come with your own tips, suggestions and any questions you might have! Register now

Dr. Donohue: High Blood Pressure Affects Lungs

Tue, 30 Aug 2011 14:36:03 GMT

(STLtoday) - Read a follow-up letter to Dr. Donohue's earlier column answering a question on PH: "All the doctors I saw scratched their heads. Then I read your article on pulmonary hypertension. Everything fit my picture. I asked two docs to consider it. They said it was unlikely, because it was so rare. Yesterday the heart doctor gave me a stress test with ultrasound." Read article

New Study Will Explore Impact of Exercise on Pulmonary Hypertension

Tue, 30 Aug 2011 14:33:29 GMT

8/26/2011 (Univ. of Wisconsin) - Funded by a four-year, $2.5 million grant from the National Institutes of Health, Naomi Chesler, an associate professor of biomedical engineering at UW-Madison, will investigate the relationships between small artery narrowing, large artery stiffening and their interactions with the right side of the heart in patients with PAH. Read article

United Therapeutics Will Move Forward With FDA Filing For New Drug

Thu, 25 Aug 2011 13:11:08 GMT

8/24/11 (Metro Business Media) - United Therapeutics Corporation released its FREEDOM-C(2) Phase 3 clinical trial results today but the company announced that the study did not meet its primary endpoint. Oral treprostinil (treprostinil diethanolamine) is next in the pipeline of drugs to treat PAH. United Therapeutics said that the tablet form of treatment for PAH did not post any statistical significance in the FREEDOM-C(2) trial. Read article

16 Tips to Help You Shake Your Sodium Habit

Wed, 24 Aug 2011 15:18:03 GMT

Did you know that milk, parsley flakes, aspirin, and some brands of toothpaste and mouthwash contain sodium? If your doctor has advised you to follow a low-sodium diet, don't forget to read your labels! Read more tips

PHA on the Road: Session Recordings Now Available

Wed, 24 Aug 2011 15:15:50 GMT

Select sessions from the Minneapolis, Minn., PHA on the Road forum on June 18 are now available online. Session topics include How is PAH Diagnosed, Understanding Transplant Options, PH and Connective Tissue Disease and more. Continue your education at PHA Classroom

Shop Online with August Fundraisers

Tue, 23 Aug 2011 21:02:23 GMT

From Special Event Organizer Lindsay Collins:

Hello PHriends,

Sweet Peas & Snuggles, Scentsy, and Jody's Watches are all having online fundraisers to benefit Colorado's 2nd Annual Run for PHun on September 19, 2011. This event will be sponsored by the Childrens Hospital Colorado, The University of Colorado Hospital, and The Pulmonary Hypertension Association. It is a "fundraiser for a fundraiser" if you will.

These are ONLINE fundraisers. All you have to do is go to websites listed below and follow the directions provided. You will be able to purchase any item and a percentage of all sales will go directly to the Pulmonary Hypertension Run for PHun. If you would like to make a monetary donation instead of a purchase, please contact the seller directly (see below) or go to: http://www.firstgiving.com/phassociation/Colorado5K.

Pillow Pets & Snuggles may be purchased through the following website:
www.SweetPeasandSnuggles.com
Use code: PHunRun2011 to have 15% of your purchase donated to the Run for PHun
They ship to any address and shipping is free for purchases over $100.
Seller: Shantrell Kramer 703-554-7396 or peasandsnuggles@aol.com

To order Scentsy products go to:
www.Shantrell.Scentsy.us
Order directly under the party "PHun Run"
Seller: Shantrell Kramer 703-554-7396 or nurseshanti@aol.com

Jody's Watches can be found at:
http://jewelrywonder.com/jodyswatches
Everyone knows someone who enjoys jewelry!
Seller: Jody Miller 720-244-4048 or jtani10@aol.com

THIS FUNDRAISER LASTS FROM AUGUST 1 THROUGH AUGUST 31......SO DON'T MISS OUT.

For more information about the PHun Run please go to: http://www.firstgiving.com/phassociation/Colorado5K

If you have any questions about this fundraiser, please feel free to contact:
Lindsay Collins at 720-297-4626, lcollins23@msn.com or Christine Kramer at 303-475-0727.

Healing Heart Defects: Indigent Parents in Nigeria Cry Out for Help

Tue, 23 Aug 2011 20:52:30 GMT

8/21/2011 (Vanguard) - Mercy Ogbosu was distraught when she took her 10-year-old daughter, Christiana, to the Lagos University Teaching Hospital (LUTH), Idi-Araba, in August 2010, and was told the little girl had a hole in the heart. Read article

Diagnosing and Treating PAH

Fri, 19 Aug 2011 20:50:49 GMT

8/18/11 (The Egyptian Gazette) - One such disease is pulmonary arterial hypertension (PAH). It is caused by a continuous narrowing and clogging in pulmonary blood vessels, which leads to high blood pressure of the pulmonary arteries. According to Dr Awad Tag el-Din, Head of the Egyptian Association of Pulmonary Diseases, PAH is very dangerous in afflicting these pulmonary arteries that connect the lungs with heart. Read article

Details of Updated UK Heart Failure Guidelines Raise Some Eyebrows

Fri, 19 Aug 2011 20:44:00 GMT

8/17/11 (Forbes) - Much of the controversy revolves around the relative weight given to echocardiography and natriuretic peptides in the diagnosis and treatment of heart failure. The updated NICE guidelines recommend that for the diagnosis of heart failure in patients with no history of MI, echocardiography should be used only if natriuretic peptides are raised. Peterson and Rumsfeld point out that both the ESC and ACC/AHA guidelines recommend that all patients with the signs and symptoms of heart failure should have an echocardiogram. The NICE position, they say, “may be questioned because of the utility of echocardiography for not only measuring left ventricular function but also for detecting structural or valvular heart disease, pulmonary hypertension, and pericardial effusion.” Read article

Device Gives Heart Disease Patient an Improved Way of Life

Fri, 19 Aug 2011 20:32:00 GMT

8/15/11 (Argus Leader) - For Gustafson, it all began eight years ago when he noticed his legs were swelling and he was short of breath. During a physical work-up, it was discovered that he had hypotrophic cardiomyopathy, a hereditary heart disease. The condition often goes undiagnosed because symptoms are usually mild, according to mayoclinic.com. Not so with Gustafson. The disease caused the walls of his heart to thicken, making it inefficient. "It can't pump the volume it should," he says. Organs suffered, he developed pulmonary hypertension and his kidneys went into failure. Read article

Evidence for the Role of Haptoglobin Phenotypes in Toxic Oil Syndrome

Fri, 19 Aug 2011 20:27:12 GMT

8/15/11 (spectroscopyNOW.com) - It is now 30 years since toxic oil syndrome struck in Spain with devastating consequences. It is a food-borne disease that is estimated to have killed at least 2500 people with thousands more affected to this day with different degrees of disability. There was a swathe of acute symptoms which developed into chronic conditions such as motor neuropathy, musculoskeletal pain, sclerodermia, pulmonary hypertension, liver impairment, hypothyroidism and diabetes mellitus. Read article

Date Set for Boy's Heart Operation

Fri, 19 Aug 2011 20:18:22 GMT

8/11/11 (Press-Telegram) - A tentative surgery date has finally been set for an impoverished Cambodian boy in need of an open-heart operation. Children's Hospital Los Angeles has set Sept. 6 as the likely date for the surgery for Bunlak Song, according to Peter Chhun, whose nonprofit is sponsoring the boy. Read article

High Blood Pressure in Lungs Can Pose a Danger for Women

Fri, 19 Aug 2011 20:14:32 GMT

8/11/11 (stltoday.com) - A recent study has shown that pulmonary hypertension, or abnormally high blood pressure in the arteries of the lungs, affects about four times as many women as men in the United States. One of the most alarming findings of the study is that those with the disease were likely diagnosed many months after the first sign of symptoms. Read article by PHCR member Dr. Neil Ettinger

Conference Research Room Helps Researchers Develop New Tests for PH Patients.

Sat, 13 Aug 2011 01:47:01 GMT

An interdisciplinary group of researchers from Boston have developed a microfluidic device that can test for the number of beneficial circulating endothelial progenitor cells (EPCs) in the blood stream of patients with cardiovascular disease. The number of EPCs in the blood can be used as a biomarker for risk assessment, disease progression and the response to therapy. Up to now, the measurement of EPCs in the bloodstream was very difficult and laborious and therefore, not very useful to physicians working with PH Patients at the bedside.

Dr. Hansmann and colleagues have attended the research room at PHA’s 2010 International Conference to apply the so called "EPC Capture Chip" in over 40 patients with PAH. They found the EPC numbers in PAH patients to be half the number in healthy controls. The new EPC capture chip has tremendous potential for serving as a rapid bedside tests to monitor treatment and disease progression. The research team includes: Georg Hansmann; B.D. Plouffe; A. Hatch; A. Von Gise; H. Sallmon; Roham T. Zamanin; Shashi Murthy. Read abstract

Michigan Woman Fights Pulmonary Hypertension in the Water

Mon, 08 Aug 2011 20:14:40 GMT

8/5/2011 (MLive) - When 79-year-old Veronica Greason looks around the pool at the Midland Community Center, she knows she’s working 10 times harder than the “floaters” bobbing up and down for exercise. “I call them floaters, because they just kind of hang out and talk in one place and call it exercise,” Greason says as a puff of oxygen pumps through her nose. Read article

Living with Scleroderma - Video from AM Northwest

Mon, 01 Aug 2011 16:54:15 GMT

7/25/2011 (KATU) - Christina Current Fidalgo, Fay Maushard and Donna Stone describe what it's like to live with Scleroderma and how people can help fund research for this disabling disease. Read article and watch the video

PHA Debuts NEW Survival Guide

Mon, 25 Jul 2011 15:28:07 GMT

PHA is proud to debut the updated and totally redesigned 4th Edition of Pulmonary Hypertension: A Patient’s Survival Guide, PHA’s resource text for patients and caregivers!

The new 4th Edition features five revised chapters, including:

Diagnosis
PH drugs
Surgical treatments
Children, teens and family planning
Insurance and legal matters

The book also has a brand new chapter written just for PH caregivers.

You can purchase your new copy now at the PHA Store! The book is $15 for PHA members and $25 for non-members. Visit the PHA Store or call PHA at 301-565-3004 to order your copy now!

10 Year-Old PH Patient sees a String of Successes After PH Diagnosis

Mon, 25 Jul 2011 14:56:58 GMT

7/24/2011 (nj.com) - The last six months for Randy Ramos can be summed up by a two-foot long strand of beads. The red spheres mark every blood transfusion the 10-year-old has received since he was diagnosed with pulmonary hypertension early this year. Read article

Transplant Pioneer Celebrates 19 Years of Health

Mon, 25 Jul 2011 14:53:50 GMT

7/22/2011 (Saskatoon CTV News) - It was 19 years ago that Sherry Duncan Paterson underwent a double-lung heart transplant, making her a pioneer in the Canadian transplant world. 19 years ago, after the birth of her second daughter, Paterson was diagnosed with a rare disease called primary pulmonary hypertension. Read article

Take Action: Advocate for NIH and CDC Funding Before July 26!

Tue, 19 Jul 2011 14:56:27 GMT

This coming Tuesday, July 26, the House Labor-HHS-Education Appropriations Subcommittee is scheduled to put forth its Fiscal Year (FY) 2012 budget. It is expected that this bill will contain significantly less money for many programs and could affect the budgets for the National Institutes of Health (NIH) and Centers for Disease Control (CDC). Contact your Representative and tell them how critical NIH and the CDC research is for the pulmonary hypertension community.

NIH Funds New Stem Cell Projects

Tue, 19 Jul 2011 14:50:15 GMT

(RT Magazine) - The National Institutes of Health (NIH) has provided $85 million over 5 years to nine new studies aimed at developing induced pluripotent stem (iPS) cells from patients with genetic variations that have been associated with pulmonary hypertension, coronary artery disease, clotting disorders, diabetes, and other conditions. The studies will build upon previous genome-wide association study (GWAS) findings and investigate how gene variants lead to the physical manifestations of these diseases. Read article

First PHA Telephone Support Group Meeting July 28

Mon, 18 Jul 2011 16:45:43 GMT

Thursday, July 28, 8:00 p.m. ET

Have a hard time making it to a support group meeting? No problem. PHA is bringing the support group to YOU — straight to your home — via a telephone support group. The topic of the first meeting is "Getting to Know You."

Email Debbie@PHAssociation.org to participate.

Study: PH Patients at Increased Risk after Total Knee Arthroplasty

Mon, 18 Jul 2011 15:58:29 GMT

7/15/2011 (Ortho SuperSite) - A study by researchers at the Hospital for Special Surgery has found patients who have a history of significant medical issues — especially congestive heart failure or pulmonary hypertension — are at increased risk for major complications following total knee arthroplasty. Read article

Health Care Reform Clears Path for Life-Saving Organ Transplant

Thu, 14 Jul 2011 19:17:07 GMT

7/13/2011 (Insurance News Net) - You could say health care reform saved Milton Gilmer’s life. The Affordable Care Act was signed into law March 23, 2010, with the aim of extending medical coverage to more Americans. The law has been a political football, and arguments continue to rage over whether it’s good or bad for the country. This, however, is simply the story of how it affected one person. Read article

Graduate Student One Step Closer to Finding Cure for Cardiovascular Disease

Tue, 12 Jul 2011 21:09:31 GMT

7/10/2011 (The Gateway) - A doctoral student at the University of Alberta has made a discovery that could lead to a cure for a disease which usually leaves approximately three years of life once diagnosed. Gopinath Sutendra has been researching pulmonary arterial hypertension, a disease characterized by excessive cancer-like growth of the cells in the pulmonary vessels of the heart, which provide blood to and from the lungs. These vessels end up getting blocked, resulting in right heart failure. Read article

Wednesday Webinar: Fight the Cause Online 2.0

Mon, 11 Jul 2011 18:33:24 GMT

Wednesday, July 13, 3:30 p.m. ET, Webinar

Are you on Facebook? If so, this is the webinar for you! PHA staff and community members Colleen Brunetti and Lucia Martuccio will talk about how to use social networking sites to take action in support of PH research and education, as well as how you can go beyond Facebook to make a bigger impact and raise more funds using PHA's easy online tools.

Delayed Disease Recognition in One in Five Patients With PAH

Mon, 11 Jul 2011 18:25:25 GMT

7/8/2011 (DoctorsLounge) - One in five patients report symptoms of pulmonary arterial hypertension for more than two years before the disease is diagnosed, with patients younger than 36 years being most likely to experience delayed recognition, according to a study published in the July issue of Chest. Read article

Join Kim Ford for Pulmonary Hypertension Awareness Day on July 8

Tue, 05 Jul 2011 20:55:42 GMT

Pulmonary hypertension patient Kim Ford is taking her search for a cure with her everywhere she goes…and a lot of places she’s never been. From her Facebook account in Maryland, Kim’s organizing a nationwide PH Awareness Day on July 8. Participants will wear PH pins and clothing, distribute brochures, and raise awareness online.

Learn more

Risk of Blood Clot to Lungs From Sitting too Much: Study

Tue, 05 Jul 2011 16:49:35 GMT

(Heartzine.com) - A study published in the British Medical Journal today has a finding which is relevant to a large percentage of the population; it describes an increase in the risk of developing pulmonary embolism for women who sit more than forty-one hours a week outside of work. Read article

Heart and Lung Transplant Recipient in Australia Hoping for a Breakthrough

Tue, 05 Jul 2011 16:45:37 GMT

(inMyCommunity) - BORN with a hole between the two atria of his heart, and with the vital organ essentially operating back to front, Mike Lambe has always known he would one day need a heart transplant. He developed pulmonary arterial hypertension and received new lungs along with his heart just over six months ago. Read article

The Meaning of Events...

Fri, 01 Jul 2011 15:07:09 GMT

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary

The meaning of events...

The First Annual Power for PH PHun Walk for a Cure from PHAssociation on Vimeo.

Last month, Jill Glenn called to say she was going to The First Annual Power for PH PHun Walk in Edison, N.J.

Jill is president of Glenn and Glenn Productions - producers of our Kilimanjaro Climb (2nd video on linked page) and Lil Long videos - and a good friend and member of PHA. Besides walking and raising funds for PH in her own community, Jill asked if we thought it would be ok if she and her team made a pro bono video of the event.

I know the quality of Jill's work and was excited. Glenn and Glenn are great listeners and their fiilms go beyond pretty shots to capture the meaning of what our community does.

So, the video is ready and here it is. I know how I feel about it...Jill and Doug and their team have taken the story of one event and presented a picture of why people do what they do across our entire community. What do you think?

Global Partnerships...Greater Strength and Knowledge for us All

Thu, 30 Jun 2011 14:43:16 GMT

The following is a copy of an entry from PHA President Rino Aldrighetti's blog: Empowered by hope - a PHA diary

Global partnerships...greater strength and knowledge for us all

Several months ago, PHA announced the U.S. and international recipients of PHA's 2011 Tom Lantos Innovation in Community Service Awards. PH Israel was one of the awardees. Here is a note from Dr. Yosef Gotlieb to PHA's Senior vice president, Adrienne Dern, on the outcome of their project.

Dear Adrienne,

It is with pleasure that I am writing to let you know that the conference sponsored by the Israel Pulmonary Hypertension Association on Thursday, June 16th was a resounding success.

Nearly a hundred participants came to the meeting on "Pulmonary Hypertension: Profile of the Disease" to hear Israel's top experts lecture on the various aspects of PH: symptomatology, typology, diagnostics, therapies, and research horizons for treatment and diagnosis. The number of those in attendance was high despite a doctor's strike which required many senior physicians to substitute for younger doctors in the clinics and wards. Despite this, the auditorium was packed and we found ourselves having to add chairs throughout the first two sessions.

A panel on the complexity of care included a family physician, a mental health and support group worker, the director of a pulmonary rehabilitation unit at a children's hospital. a medical technology professional, and myself representing the patient's perspective. A vigorous dialogue ensued between pulmonary specialists and primary care physicians. The session ended with the promise of continuing exchange and engagement; as this was a major goal of the conference, we were very pleased to see this take place. We, the organizers and the participants who provided feedback, left the conference with the feeling that that the Israel PH community had been significantly expanded and strengthened by the conference and that there would be continuing impact on the target group we had sought to influence, namely, the primary care community.

Of those who attended the event, which was conducted in a decorous setting at a seafront Tel Aviv hotel, most were clinicians (physicians and nurses); a number of professors and heads of departments were also present. We have documented the meeting (some of the initial photos are attached) in stills and video and look forward to sharing our experience with other PH associations. We have already begun discussing possibilities for the next event to be held in what we hope will be a continuing series of meetings focused on professional and patient education.
On behalf of the Israel Pulmonary Hypertension Associationand myself, I want to reiterate how grateful we are to the sponsors of Tom Lantos Innovation in Community Service Awards and to Representative Lantos' family for enabling us to hold the event. Further, I wish to express again our gratitude to you and the Pulmonary Hypertension Association for facilitating our receipt of the funding necessary to implement this project.

We are much inspired and encouraged by the Pulmonary Hypertension Association. May you and the Association go from strength to strength.

Truly yours,

Yosef

Yosef Gotlieb, PhD

There's a lot more to read about the gvibrant and growing global PH community in the International section of PHA's website!

Viagra Keeps Newport Baby Alive

Thu, 30 Jun 2011 13:50:24 GMT

6/29/2011 (South Wales Argus) - AT JUST five months old, little Cerys Small has survived three open heart operations and is being kept alive thanks to daily doses of Viagra. Read article

There's Still Time to Enter a Conference Theme Idea

Tue, 28 Jun 2011 14:59:27 GMT

10th International PH Conference and Scientific Sessions
June 22-24, 2012 – Orlando, Fla. – Renaissance Orlando at SeaWorld
www.PHAssociation.org/Conference

Submit your theme idea by June 30!

As PHA plans to head back to Florida in 2012, we turn to you - the members of the PH community - to create an inspirational theme for this special 10th International PH Conference. This theme should convey the history of the organization and help us celebrate PHA and the progress of the PH community at our homecoming around the kitchen table.

The winner of the Conference theme contest will receive a complimentary registration to PHA's 10th International PH Conference and Scientific Sessions in Orlando, Fla. from June 22-24, 2012.

Learn more about the Conference the contest

Also, sign up for PHA’s Conference Alerts (will be prompted to sign in) – so you can stay informed on all the up-to-date information about the 10th International Conference and Scientific Sessions.

How to Submit a Theme Idea
Please submit Conference theme ideas to Conference@PHAssociation.org or PHA, Attn: Conference Theme Contest, 801 Roeder Road, Suite 1000, Silver Spring, MD 20910.

Deadline for submission is June 30, 2011 -- So send in your theme ideas TODAY!
Submissions will be reviewed and selected by PHA's Conference Committee.

United Therapeutics to Develop PH Treatment Based on Cells of a Placenta

Tue, 21 Jun 2011 12:37:00 GMT

6/20/2011 (Business Journal) - United Therapeutics Corp. plans to develop a new treatment for pulmonary hypertension based on the cells of a placenta. Read article

Washington University Surgeons Successfully use Artificial Lung in Toddler

Tue, 21 Jun 2011 12:36:15 GMT

6/18/2011 (eNews SPF) - Two-year-old Owen Stark came to St. Louis Children's Hospital in the summer of 2010 near death from heart failure and dangerously high blood pressure in his lungs. Washington University physicians and surgeons at St. Louis Children's Hospital knew they had to act fast to save his life. They collaborated to make several strategic and innovative decisions that led to the first successful use of an artificial lung in a toddler. Read article

Jim Gebhardt - PH Patient - Rides With a Purpose

Wed, 15 Jun 2011 21:04:44 GMT

6/10/2011 (Leavenworth Times) - It could be the ride of Jim Gebhardt's life. Starting at 7 a.m. Friday, the Fort Leavenworth senior military analyst said he will be on a nine-day 4,015-mile trek through 11 states to the northeastern tip of California with three friends, all on motorcycles and all between the ages of 55 and 66, through all types of weather and altitudes. Read article

50 State Media Challenge: Get Coverage in 35 States by Sept. 1

Mon, 13 Jun 2011 20:24:13 GMT

Since the last 50 State Media Challenge update in April, PHers have received 14 news articles, bringing us to 36 articles in 23 states! We’re almost halfway to our goal of raising awareness in all 50 states and you can help us get the rest of the way there! » Join the challenge and read media success stories

Why Does Western Australia Lag Behind in Organ Donation?

Fri, 10 Jun 2011 15:03:38 GMT

(Australian Broadcasting Corp.) - The Perth mother of two has a chronic lung condition and is one of about 1,700 people Australia-wide in need of an organ transplant. "During my second pregnancy three and a half years ago I became sick and developed pulmonary hypertension. As a result I need a double lung transplant and have been on oxygen 24 hours a day ever since." Read article

e-Learning Event: Lobby Locally - Fighting PH through District Visits

Thu, 09 Jun 2011 21:17:00 GMT

Wednesday, June 15, 7:00 p.m. ET, Webinar
Congress’s August Recess is just around the corner. That means it is time to plan a face-to-face visit with your members of Congress at their local offices. Join Gavin Lindberg and Carl Hicks as they talk about the power of district visits. Register now

Right Ventricular Structure Differs by Patient Age, Sex, Race

Tue, 07 Jun 2011 14:16:00 GMT

6/6/2011 (Internal Medicine News) - Right ventricular mass, volume, and ejection fraction differ significantly according to patient age, sex, and race, according to a prospective imaging study of more than 4,000 healthy people that was reported in Circulation on June 6. Read article

FREEDOM-M Trial of Oral Treprostinil in PAH Meets Primary Endpoint

Mon, 06 Jun 2011 14:00:37 GMT

(The Sacramento Bee) - United Therapeutics Corporation announced today the completion of its FREEDOM-M Phase 3 trial of treprostinil diethanolamine (oral treprostinil), an investigational sustained release oral formulation of treprostinil, a stable synthetic form of prostacyclin, in patients with pulmonary arterial hypertension (PAH). Preliminary analysis demonstrates that the trial has met its primary endpoint. Read article

Parents Make Public Appeal on Behalf of 5-week-old Daughter Who Needs Lung Transplant to Survive

Mon, 06 Jun 2011 13:59:29 GMT

6/5/2011 (Business Wire) - Marc and Leslie Policastro of Camarillo, Calif. made a public appeal to the media Friday on behalf of their 5-week-old daughter, Katelyn, who is in immediate need of a lung transplant in order to survive. Read article

June is Scleroderma Awareness Month

Thu, 02 Jun 2011 18:51:52 GMT

May 31, 2011 (PR Newswire) - June is Scleroderma Awareness Month, and you can become an advocate for the Scleroderma Foundation by raising awareness and teaching others about this chronic, connective tissue disease. Read article

9-year-old Developed Pulmonary Hypertension After Living in High Country

Tue, 31 May 2011 14:17:25 GMT

5/26/2011 (Summit Daily News) - Looking back, former Placer Valley resident Susie Ryan says there were plenty of signs hinting at her son Charlie Ryan's pulmonary hypertension. They just weren't very evident to everyone around him. Read article

Pulmonary Hypertension Bill Introduced in House of Representatives

Fri, 20 May 2011 19:01:18 GMT

The Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 (H.R. 1810) was introduced in the House of Representatives last week by Reps. Kevin Brady (R-TX) and Lois Capps (D-CA)!

Learn more and take action

ATS: Heart Drugs Fail to Show Benefit in PAH

Fri, 20 May 2011 14:08:47 GMT

5/19/2011 (MEDPAGE Today) - Two drugs that are beneficial in heart disease were ineffective in treating pulmonary arterial hypertension (PAH), a researcher said. In a randomized trial, neither aspirin nor simvastatin (Zocor) improved performance on the standard six-minute walk test, according to Steven Kawut, MD, of the University of Pennsylvania in Philadelphia, and colleagues. Read article

Registration still available for PHA on the Road!

Thu, 19 May 2011 19:18:49 GMT

Registration still available for PHA on the Road!

PHA is heading back across the country in a few weeks with PHA on the Road: PH Patients and Families Education Forum – and there’s still time to register to attend!

June 4: Seattle, Wash.
June 11: Pittsburgh, Penn.
June 11: St. Louis, Mo.
June 18: Minneapolis, Minn.

http://www.PHAssociation.org/OnTheRoad

This FREE full-day patient and families education program provides attendees with PH education through interactive sessions which will cover topics such as diagnosis, long-term management as well as lifestyle issues. The program will also offer networking opportunities where attendees can interact with other patients and family members, as well as local medical professionals.

Participation in PHA on the Road is FREE, but space is limited and registration is required. Bring your friends, neighbors, coworkers – anyone who could benefit from some PH education! There is still space left, so register today.

Dr. Ronald Oudiz Receives 2011 Award of Excellence in PAH Care

Wed, 18 May 2011 18:01:41 GMT

The Pulmonary Hypertension Association is pleased to announce that Dr. Ronald Oudiz has been selected as the 2011 recipient of the PHA Award of Excellence in PAH Care. This prestigious award is given annually to a physician who has demonstrated clinical excellence in caring for patients with PAH, as well as exceptional support for the development of the PH community. Read more

PH Email Mentor Spotlight: Liz Brigham

Wed, 18 May 2011 17:57:00 GMT

After being diagnosed in 2004, Liz found perspective and hope from other pulmonary hypertension patients. Now she finds meaning in her own life by supporting others in the same boat.

Meet Liz | Learn more about PH Email Mentors

Twitter Helped Doctors Tell Patients Where to Get Meds After Japan Earthquake

Fri, 13 May 2011 13:56:35 GMT

5/12/2011 (Scientific American) - In the hours after the magnitude 9.0 earthquake and massive tsunami hit Japan in March, essential infrastructure and communication were cut off, leaving many of the disasters' survivors without access to phones, electricity or water. And those who were on essential medications were on the cusp of losing their lifeline, too. Read article

Mother in Australia Seeks Answers for Daughter’s Death

Fri, 13 May 2011 13:51:55 GMT

(The West Australian) - A grieving Spearwood mother wants an independent inquiry into the death of her daughter from a suspected blood clot two weeks after she was sent home from hospital after bungled care. She wants to raise awareness that even seemingly healthy young people can suffer pulmonary hypertension, a form of high blood pressure in the arteries of the lungs sometimes linked to blood clots. Read article

Four-Year-Old Boy "Shortest" in UK to Get New Lungs

Fri, 13 May 2011 13:44:22 GMT

5/11/2011 (BBC News) - A four-year-old boy is the shortest person in the UK to have a successful lung transplant, doctors said. Surgeons at Great Ormond Street Hospital in London carried out the transplant involving Mason Lewis, measuring 93cm (3ft) tall. Mason, of Atherstone, Warwickshire, has suffered from pulmonary hypertension since birth. Read article

NY Fun Walk to Partner with Islanders Hockey Team

Tue, 10 May 2011 20:57:16 GMT

The New York Fun Walk, a long-standing fundraiser benefiting the Pulmonary Hypertension Association’s (PHA’s) research fund, will have an exciting change of location for its 7th annual walk this fall. The event will be held at the New York Islanders professional hockey team stadium, Nassau Coliseum, in Uniondale, N.Y. The walk will take place in the coliseum’s expo area, and will be immediately followed by an Islanders game in which PHA will be the featured charity. The date for this event has yet to be confirmed, but it will take place sometime this November. Be on the lookout for an announcement on the final date later this summer!

For more information about this exciting venue, visit the Nassau Coliseum website.

Pfizer’s Revatio Receives European Approval to Treat PAH in Children

Tue, 10 May 2011 15:11:18 GMT

5/9/2011 (InPharm) - The European Commission has given the green light to phosphodiesterase-5 inhibitor Revatio (sildenafil) for pediatric patients. Read article

High School Junior and Lung Transplant Recipient Pushes for Organ Donation Education

Mon, 02 May 2011 16:21:25 GMT

4/30/2011 (Newsleader.com) - Maddie knew she had months, not years. When she was placed on the national organ transplant list because her lungs were failing, her doctors couldn't answer the big when — or if — question. Two months later she got the call. Her new organs were waiting for her at the Children's Hospital of Pittsburgh. Read article

Pulmonary Hypertension After a Lung Transplant Predicts RRT Need

Mon, 02 May 2011 16:16:24 GMT

4/29/2011 (Renal & Urology News) - Pulmonary hypertension is a strong predictor of the need for renal replacement therapy (RRT) after lung transplantation, according to researchers. Read article

Healthcare Reform: Learn How It Has Impacted the Pulmonary Hypertension Community

Wed, 27 Apr 2011 17:50:45 GMT

Healthcare Changes in 2011: How Healthcare Reform Will Affect the PH Community
Monday, May 2, 3:30 p.m. ET, webinar

In March 2010, the Affordable Care Act (ACA) was signed into law, drastically changing the healthcare industry in the United States. Although many of the changes will require up to 10 years to completely implement, the pulmonary hypertension community has already started to feel the effects of the new law.

Join Gavin Lindberg, PHA’s Washington Representative, as he explains what provisions are included in the ACA, how these changes have already affected the PH community, and what to expect over the upcoming months and years.

International Highlights: What’s Going on Around the World?

Wed, 27 Apr 2011 11:23:26 GMT

4/19/2011 - Did you know that there are more than 50 PH associations operating worldwide? Just a few decades ago, the resources, support, and encouragement that these groups offer today just didn’t exist! Here’s a round-up of some highlights from our friends overseas, pointing yet again to the incredible energy of our global PH community! Read more

TAKE ACTION: Pulmonary Hypertension Call In Day Tomorrow!

Mon, 25 Apr 2011 16:32:44 GMT

Join the PH community on April 26 for PHA’s National Call-In Day! Call your Members of Congress and urge them to do their part to cure PH by cosponsoring the Tom Lantos PH Research and Education Act of 2011. Call your legislators tomorrow, the 26th

Invitation for Physicians and Researchers to Attend ATS Event

Mon, 25 Apr 2011 16:28:08 GMT

Actelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee invite physicians and researchers to the 2011 ENTELLIGENCE™ Young Investigators Award Ceremony to be held on May 17 during the upcoming American Thoracic Society (ATS) meeting in New Orleans. Learn more (PDF)

Children’s Organ Transplant Association Gives Hope and Makes Miracles

Mon, 25 Apr 2011 15:17:37 GMT

4/21/11 (PNW Local News) - Giving hope, making miracles – the Children’s Organ Transplant Association (COTA) has been doing this for 25 years. In Auburn, a group of caring and committed people is working to give hope, and possibly make a miracle for 11-year-old Cullen Steele. Cullen has pulmonary hypertension and needs a heart and double lung transplant. Read article

Pulmonary Arterial Dysfunction in Insulin Resistant Obese Zucker Rats

Mon, 25 Apr 2011 15:16:38 GMT

4/22/11 (7th Space) - Insulin resistance and obesity are strongly associated with systemic cardiovascular diseases. Recent reports have also suggested a link between insulin resistance with pulmonary arterial hypertension. Read article

REVEAL Registry: PAH Exacerbated by Presyncope, Syncope

Wed, 20 Apr 2011 18:38:23 GMT

4/18/2011 (Cardiology Today) - For patients with pulmonary arterial hypertension, a history of presyncope and syncope worsened the severity of disease, according to data from the REVEAL registry. What this indicates, according to researchers, is the importance of validating the prognosis and effect of syncope among patients with PAH as treatment guidelines continue to be defined. Read article

Study Supports the Safety of Transitioning PAH Patients from Inhaled Iloprost to Tyvaso

Wed, 20 Apr 2011 18:37:03 GMT

(RT Magazine) - An open-label study demonstrated that the rapid transition from inhaled iloprost to Tyvaso® (treprostinil) was well tolerated and associated with maintenance of exercise capacity and improved quality of life in pulmonary arterial hypertension (PAH) patients. Read article

Judge Nancy McDonnell Knows the Importance of Organ Donation

Wed, 20 Apr 2011 18:35:57 GMT

4/11/2011 (Cleveland.com) - Cuyahoga County Common Pleas Judge Nancy McDonnell's health began to fail in fall 1995. She was increasingly short of breath and went to her family doctor. Previous bouts with bronchitis were resolved with antibiotics. Different antibiotics were used, but a persistent cough would return. Then the doctor thought she might be suffering from asthma, and she was treated with inhalers and asthma medicine. After days of tests, she was diagnosed with primary pulmonary hypertension. Read article

April is National Donate Life Month

Thu, 14 Apr 2011 18:13:43 GMT

More than 110,000 Americans, including pulmonary hypertension patients, are waiting for organ transplants. Learn more and spread the word about the need for organ donors.

Hear renowned opera singer Charity Tillemann-Dick’s PH transplant story.
Visit PHA’s transplant resource section.
Learn the facts about organ donation or register as a donor: www.organdonor.gov or www.donatelife.net
Contact your local media and ask them to spread the word about PH the need for organ donors. Get started with PHA’s template press release. (MS Word document)

Join the Pulmonary Hypertension Insurance Mission!

Mon, 11 Apr 2011 21:26:34 GMT

Working with insurance companies to get coverage for critical tests and pulmonary hypertension therapy can be an uphill battle, whether you are a PH patient or PH-treating medical professional. Fortunately, there are resources to help you advocate for PH therapy coverage.

Join Toni Heininger, Health Project Coordinator at University of Rochester, along with Margaret Beardsworth, PHA’s Insurance Program Manager, in a webinar highlighting common insurance problems and tips for confronting and educating insurance companies:

The PH Insurance Mission: Preparing for a Successful Insurance Campaign
Wednesday, April 13, 3:30 p.m. EST
Register now

Rev. White Comes to Washington

Mon, 11 Apr 2011 21:23:50 GMT

Last week, PHA Board member Steve White came to Washington to help get the PH Research and Education Act introduced with a good number of original sponsors. Rev. White shares his story on PHA President Rino Aldrighetti's blog. If you'd like to learn what you can do to help advance our common cause through contacting your member of Congress (in your own community) or creating media awareness, contact Elisabeth Williams, PHA's Grass Roots Campaign Associate, at advocacy@PHAssociation.org. Read Rev. White's story

Dr. Larissa Shimoda to Discuss Mechanisms of Hypoxic Pulmonary Hypertension

Mon, 11 Apr 2011 18:57:45 GMT

4/10/2011 (Eurekalert) - When muscles and organs are deprived of an adequate supply of oxygen the body's usual responses include increased circulation and a slight drop in blood pressure in the blood vessels serving the affected tissue. However, the blood vessels in the lungs react differently: blood pressure in the lungs rises, often with deleterious effects on the lungs' tissue and the heart. Larissa A. Shimoda, PhD, Associate Professor of Medicine at the Johns Hopkins University School of Medicine in Baltimore, Md., has dedicated her research to learning why this happens. Read article

New Clinical Trials Law to Benefit Rare Disease Communities

Thu, 07 Apr 2011 16:41:18 GMT

Thanks to your calls and emails, and the advocacy of other rare disease groups, the Improving Access to Clinical Trials Act (IACT) went into effect on April 4. The IACT enables patients with rare diseases to enroll in compensated clinical trials without that compensation counting against their Social Security Income (SSI) or Medicaid eligibility income caps.

The IACT permits these SSI and Medicaid beneficiaries to accept up to $2,000 per year in compensation for participating in a clinical drug trial without losing their federal benefits. These changes allow more patients to participate in research trials that may someday lead to new treatment and eventually a cure for diseases such as PH.

Get the details about SSI benefits | Read more about the implications of the law

High School to Host 5K Fundraiser to Benefit Autism Speaks and PHA

Thu, 07 Apr 2011 16:37:13 GMT

4/6/2011 (Neighbor Newspapers.com) - It started with a simple idea: a fundraiser with a big impact. The result was planning Dunwoody High School’s first 5K run to benefit Autism Speaks and the Pulmonary Hypertension Association. The cross country team chose PHA in memory of Eve Greenstein, parent of two cross country students, who died from the disease. Read article

Hard to Breathe

Thu, 07 Apr 2011 16:36:15 GMT

4/5/2011 (Clarion Ledger) - It may be a short walk from her house to the mailbox, but it was a trek Sylvia Wallace, 57, of Jackson could not accomplish in the fall of 2008. She became so out of breath one night as she tried to walk to the restroom, her husband rushed her to Central Mississippi Medical Center emergency department. Read article

The Grape Escape 2011 in Missouri April 30

Wed, 06 Apr 2011 14:35:00 GMT

Mark your calendars! On April 30, Bardenheier Wine Cellars of Richwoods, Mo., will host its annual fundraiser festival, The Grape Escape, featuring the amazing entertainment of the Home Grown Classics, playing from 5 - 9 p.m. Bring your family and friends for a fun picnic afternoon - including barbeque, raffles, a bake-off and complimentary wine/beer tasting.

For more information, map and directions, visit the Bardenheier Wine Cellars website. Proceeds will benefit PHA's Research Program and the St. Vincent DePaul Society.

Walk to Cure PH in Ohio April 9

Tue, 29 Mar 2011 21:14:10 GMT

On April 9, the inaugural Walk 2 Cure PH: Ellie Godina Memorial Walk will take place in Euclid, Ohio, to raise community awareness about pulmonary hypertension (PH) and to support PH research.

Show your support today! Visit the Walk 2 Cure PH website to download a walker registration form.

Breathless, But Not From Asthma

Tue, 29 Mar 2011 13:34:05 GMT

3/28/2011 (Washington Post) - The lung specialist fixed Kimberlee Ford with an unwavering gaze as he peppered her with questions that left no doubt about his skepticism: Was she looking for an excuse to miss work or school? Was she depressed? Did she use illegal drugs? Read article

GeNO LLC Initiates Study of Inhaled NITROSYL™ Nitric Oxide in Idiopathic Pulmonary Fibrosis and Pulmonary Arterial Hypertension

Thu, 24 Mar 2011 22:02:59 GMT

3/23/2011(Medical News today) - GeNO LLC, a privately held, advanced development-stage technology company, announced commencement of the PHiano Study: A Phase 2, Dose-Escalation Trial for the Treatment of Pulmonary Hypertension in patients with Pulmonary Arterial Hypertension (PAH) and Pulmonary Hypertension secondary to Idiopathic Pulmonary Fibrosis (PH-IPF) using Inhaled NITROSYL™ nitric oxide (NO). The first patient was successfully dosed at Creighton University School of Medicine. Read article

Upcoming Webinars – New Hope for Diagnosis and Raising Awareness

Wed, 23 Mar 2011 17:16:48 GMT

The following are two upcoming PHA Classroom live events.

PIM-1: A New Hope for the Diagnosis and Treatment of PH
Friday, March 25, 2:00 p.m. ET, Webinar

As research in pulmonary hypertension grows, we may find more ways to diagnosis, treat and ultimately cure the disease. Recently, Dr. Sebastien Bonnet of Laval University in Quebec, Canada, made the exciting discovery of the PIM-1 protein; a protein virtually unseen in normal patients, but seen in patients with pulmonary hypertension in amounts relative to the severity of the disease.

With positive implications both for early diagnosis and treatment, the discovery of PIM-1 provides more insight into the disease. In this webinar, Dr. Sebastien Bonnet will discuss his research and the relationship between PIM-1 and pulmonary hypertension.

Media Matters: Working with the Media to Raise Awareness
Monday, March 28, 3:00 p.m. ET, Webinar

This is a unique opportunity to learn from experts at a communications firm.

The voice of the PH community is built on the personal stories of thousands of patients, caregivers, friends and medical professionals. Each of these stories is a powerful tool in raising awareness and working for a cure.

Join Jeff White and Hillarie Turner from Environics Communications and Elisabeth Williams from PHA for an encore performance to learn about using the media to your advantage when raising awareness in your community. This webinar is a great resource for both new and experienced media advocates. It will provide tips on pitching your story, what to do (and not do) in an interview, spotting media opportunities and more!

CHMP Post-Authorisation Summary of Positive Opinion for Revatio

Mon, 21 Mar 2011 15:05:05 GMT

LONDON, 3/17/2011(PharmaLive) - On 17 March 2011 the Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion recommending a variation to the terms of the marketing authorisation for the medicinal product Revatio. The marketing authorisation holder for this medicinal product is Pfizer Ltd. Read article

PH Patient Partners With Popular Local Business to Benefit PHA

Wed, 16 Mar 2011 18:28:11 GMT

On March 18 - 20, Posh Little Closet Consignment, a children's consignment sales business, will host its spring sale to help increase awareness about pulmonary hypertension and to raise funds for research, education and patient-serving programs.

Posh Little Closet is partnering with Amy Piazza, 31-year-old mother, wife and PH patient from Palm Coast, on her journey to create better public understanding of PH.

Throughout the event, Posh Little Closet will match $1 for every flat donation made to PHA. A concessions stand, bake sale, 50/50 raffle and educational materials will be available to shoppers throughout the weekend too!

Learn more about this unique opportunity! Follow Posh Little Closet on Facebook, and visit their spring fundraiser web page.

You can also read the event press release, and follow Amy’s PH journey on her blog.

Commentary by Charity Tillemann-Dick - Brother and I Grew 'Through' Medical Crisis

Tue, 15 Mar 2011 14:21:28 GMT

3/14/11 (Naples Daily News) - "When I was diagnosed with idiopathic pulmonary hypertension, or PH, in 2004, it changed my family dynamic significantly. My personal medical drama demanded a great deal of unselfishness from our big family." Read article

PHA on the Road Again - Register Now!

Thu, 10 Mar 2011 15:59:25 GMT

PHA on the Road: PH Patients and Families Education Forum

June 4: Seattle, Wash.
June 11: Pittsburgh, Penn.
June 11: St. Louis, Mo.
June 18: Minneapolis, Minn.
Visit PHA on the Road site

Get your maps ready because PHA is heading back across the country in June with PHA on the Road: PH Patients and Families Education Forum. PHA on the Road, a program of the Pulmonary Hypertension Association Medical Education Fund will be making stops in Seattle (June 4), Pittsburgh (June 11), St. Louis (June 11) and Minneapolis (June 18).

This FREE full-day patient and caregiver education program provides attendees with the unique opportunity to learn more about PH symptoms, diagnosis and treatment through interactive presentations, education sessions and exhibits. PHA on the Road also provides networking opportunities for attendees with others in their local regions. Attendees can interact with other patients and caregivers and meet local medical professionals in a casual non-clinic setting.

Participation in PHA on the Road is FREE, but space is limited and registration is required. Online registration is now open, so don’t relay – register today!

The Blue Lips Disease - We Set a World Record!

Thu, 10 Mar 2011 15:51:07 GMT

PHA's President, Rino Aldrighetti, recently posted a blog about the history of blue lips being a symbol of pulmonary hypertension, with periwinkle, the color some PH patient's lips turn when they are oxygen deprived, as the disease's color.

The blue lips symbol caught on big recently with the worldwide PH community stepping in to collect a record-breaking 54,949 blue kisses for the PHA United Kingdom's Pucker Up for PH Campaign. Congratulations to everyone who participated to help break the Guinness record!

Raynaud's Responds to Sildenafil

Thu, 10 Mar 2011 15:37:08 GMT

3/9/2011 (MedPage Today) - Sildenafil (Viagra) may also help treat Raynaud's phenomenon. In a small randomized, double-blinded, and placebo-controlled trial, the drug led to a significant percentage reduction in the number of weekly attacks of Raynaud's phenomenon, according to Ariane Herrick, MD, of the University of Manchester in England, and colleagues. Read article

FDA Modifies Boxed Warning For Pulmonary Arterial Hypertension Drug Letairis

Mon, 07 Mar 2011 18:04:05 GMT

3/4/2011 (PRNewswire) - The U.S. Food and Drug Administration today announced that monthly liver enzyme tests are no longer required for those taking Letairis tablets (ambrisentan), used to treat pulmonary arterial hypertension. Citing data from clinical trials and postmarket reports, the FDA said that the drug poses only a low risk of liver injury. Information related to potential serious liver injury and the need to monitor for such serious injury is being removed from the drug's boxed warning. Read article

‘Pulmonary Hypertension… A Breathtaking Disease’ European Awareness Campaign Launched on Rare Disease Day

Thu, 03 Mar 2011 17:13:33 GMT

2/28/2011 (NEWS.GNOM.ES) - Events taking place on February 28 in Brussels and Vienna mark the launch of a new European campaign to raise awareness of pulmonary hypertension. Read article

Mother of Two Urges Awareness of Congenital Heart Defects

Thu, 03 Mar 2011 17:10:27 GMT

2/28/2011 (The Niagara Gazette) - When Adrienne's daughter Olivia was born, she was informed that her baby had a heart murmur; despite her concerns, she was sent home. Then, “They took a look at some x-rays and I got a phone call from this doctor in Buffalo we had never met,” she said. “When a doctor tracks you down, you know that it can’t be good.” What the doctors had discovered was that Olivia had Truncus Arteriosus — a congenital heart defect that causes fluid to build up in the lungs and leads to pulmonary hypertension. Read article

e-Learning Event Today - Media Matters: Working with the Media to Raise Awareness

Tue, 01 Mar 2011 16:31:32 GMT

In this webinar, join PHA’s Grassroots Campaigns Associate, Elisabeth Williams, and learn from Environics Communications about using the media to your advantage when raising awareness in your community.

This webinar is a great resource for both new and experienced media advocates. It will provide tips on pitching your story, what to do (and not do) in an interview, spotting media opportunities and more!

Media Matters: Working with the Media to Raise Awareness
Tuesday, March 1, 3:00 p.m. ET, Webinar
REGISTER NOW

Findings Illuminate Role of Right Ventricular Failure in LV Free Wall Mass in Patients With CTEPH

Wed, 23 Feb 2011 14:55:53 GMT

2/16/2011 (Cardiology Today) - Right ventricular failure in patients with chronic thromboembolic pulmonary hypertension was linked with a reversible reduction in left ventricular free wall mass, study data suggest. Read article

Device in Artery Helps Track Blood Pressure in Heart Patients

Wed, 23 Feb 2011 14:54:41 GMT

2/10/2011 (The Columbus Dispatch) - As many as 2 million Americans with congestive heart failure could benefit from a pressure monitor inserted in the pulmonary artery to help doctors track early signs of trouble, according to a study published this week in the medical journal The Lancet. Read article

Tomorrow is PHA President Rino Aldrighetti’s Annual Update

Tue, 22 Feb 2011 17:49:15 GMT

State of PHA – An Annual Update from PHA President Rino Aldrighetti
Wednesday, February 23, 2:00 p.m. ET, Webinar

The cause continues to move forward in many directions. 2010 was a year of continuing growth and strength in the fight against pulmonary hypertension. In this webinar, you will hear from PHA’s President, Rino Aldrighetti, on PHA's recent accomplishments and what we expect to achieve this year. Don’t miss it.

For Medical Professionals: Neonatal and Childhood Pulmonary Vascular Disease Conference in March

Thu, 10 Feb 2011 21:53:58 GMT

PHA Building Medical Education Partnership with UCSF presents the 4th Annual International Neonatal and Childhood Pulmonary Vascular Disease Conference

For Medical Professionals:
4th Annual International Neonatal & Childhood Pulmonary Vascular Disease Conference
March 11-12, 2011
San Francisco, California

PHA is pleased to inform you about the 4th Annual International Neonatal & Childhood Pulmonary Vascular Disease Conference on behalf of the University of California, San Francisco (UCSF), a partner in PHA’s Building Medical Education in PH Program. International experts from around the world will meet to discuss the latest basic science and clinical science breakthroughs.

Half of the sessions will focus specifically on pulmonary hypertension, including information about established and emerging therapies. Conference sessions will highlight other PH specific issues such as cardiac catheterization beyond pulmonary vascular resistance as well as PH specific therapies: intravenous, inhaled and oral.

Physicians can earn a maximum of 16.25 AMA PRA Category 1 CME Credits at the conference.

View full programming information and register for the conference

Live in Arizona? Take Action for Transplants for PH Patients

Mon, 07 Feb 2011 19:49:22 GMT

Tell Ariz. Governor to Reinstate Medicaid Funding for Transplants!

Ninety-eight beneficiaries who had been previously told they were approved for transplantation under Arizona Medicaid were removed from the waiting list because funding for the procedure had been cut from the budget in a money-saving measure.

Live in Arizona? You can help!
Tell your Arizona state legislators and Governor Brewer to ensure that Medicaid recipients in Arizona have access to the life-saving transplants they need. Use PHA’s talking points to craft your email

If you have received a transplant while receiving Medicaid in Arizona, or have another related story to share, please contact Katie at 301-565-3004 x749.

Rare Disease Day is February 28 - Get Involved

Mon, 07 Feb 2011 19:44:59 GMT

February 28 is Rare Disease Day! Educate others about pulmonary hypertension and connect to this international effort. Submit a photo or video, request a proclamation, write to your Members of Congress and more. Get involved in Rare Disease Day

Live in the D.C. area? On Rare Disease Day, enjoy a rare opportunity. Participate in a free day of events at the National Institutes of Health.

Longer Time to Treatment for Child IPAH Patients

Mon, 07 Feb 2011 18:07:59 GMT

2/6/11 (MedPageToday) - According to a study of almost 3,000 patients at centers around the U.S., adults began treatment within two months of being diagnosed with IPAH -- compared with 11-months for the children, according to Robyn Barst, MD, of Columbia University, and colleagues. Read article

Society of Thoracic Surgeons: Lung Emboli Surgery Safer

Mon, 07 Feb 2011 18:07:01 GMT

2/3/11 (MedPageToday) - Outcomes from pulmonary endarterectomy for the treatment of chronic thromboembolic pulmonary hypertension are improving, despite the number of increasingly complex cases, according to a large single-center study. Read article

Recording: Listen to PHA on NPR

Fri, 04 Feb 2011 16:40:00 GMT

The Pulmonary Hypertension Association was on the Kojo Nnamdi Show, a local D.C.-area National Public Radio (NPR) program, on Wednesday, February 2. PHA staff member Debbie Castro, PH specialist Dr. Stephen Mathai from Johns Hopkins, and Dr. Gregory Kato of the National Heart, Lung, and Blood Institute (NHLBI) talked about pulmonary hypertension and PHA and answered listener questions. With 700,000 listeners, the show helped us raise awareness about the disease and PHA's work with the PH community. They dedicated the entire show to pulmonary hypertension, and it included a great question and comment portion from callers.

"Understanding Pulmonary Hypertension" on the Kojo Nnamdi Show on NPR
go to 24:33 for the segment

Two e-Learning Events This Week: Annual PH Treatments Update and Organizing a Spring Special Event

Mon, 31 Jan 2011 22:41:35 GMT

These two PHA Classroom live e-learning events are coming up this week, including our very popular annual update on PH treatments. Learn more and register today!

PH Treatments: What's on the Horizon
Tuesday, February 1, 3:30 p.m. ET, Webinar
It is an exciting time for PAH research. Over the past 13 years, eight PAH therapies have been approved by the FDA! In this session with Dr. Michael McGoon from the Mayo Clinic, learn about the new treatments available and treatments currently in the pipeline.
Register now

Special Events 101: Planting the Seeds for a Successful Spring Fundraiser
Thursday, February 3, 3 p.m. ET, Webinar
Get tips and advice on planning a PHA fundraiser from some wonderful event planners! Sign up for our Feb. 3 webinar and panel discussion.
Register now

What Works for Raynaud's Phenomenon With Ischemic Finger

Fri, 28 Jan 2011 19:27:16 GMT

1/26/11 (Internal Medicine News) - Until further testing confirms or disproves the promise of an oral formulation of treprostinil that is making its way through the developmental pipeline for management of Raynaud’s phenomenon and the ischemic finger, rheumatologists will have to continue to make do with modestly efficacious agents that all are best employed in conjunction with background therapy using a long-acting calcium channel blocker titrated to the maximum tolerated dose. Read article

U.S. Cardiovascular Disease Costs Will Triple by 2030, Study Says

Wed, 26 Jan 2011 17:29:12 GMT

1/25/2011 (Los Angeles Times) - There's a new forecast of the cost to treat heart disease in the U.S. over the next 20 years -- and it isn't pretty. According to a study published Monday in Circulation: Journal of the American Heart Assn., the annual cost to treat heart disease -- including high blood pressure, coronary heart disease, heart failure, stroke and other conditions -- will triple by 2030, from $273 billion to $818 billion (in 2008 dollars). Read article | Read the AHA Study (PDF)

Long-Term Hypoxia in Flies Shown to Result in Permanent DNA Changes

Wed, 26 Jan 2011 15:44:20 GMT

1/24/2011 (EurekAlert) - In an important study that may shed light on human ability to adapt to hypoxia, or inadequate levels of oxygen, researchers at the University of California, San Diego School of Medicine have proven that the genome of flies exposed to long-term hypoxia are changed to permanently affect gene expression. Their findings, to be published online by the journal of the Proceedings of the National Academy of Sciences (PNAS) the week of January 24, 2011, may lead to new targets for development of therapies for hypoxia-induced disease in humans. Read article

COPD in Acute MI Patients Spells Trouble

Wed, 26 Jan 2011 15:42:03 GMT

1/24/2011 (Internal Medicine News) - Chronic obstructive pulmonary disease is a powerful risk factor for in-hospital mortality or cardiogenic shock in patients presenting with ST-elevation MI, according to a large retrospective study. The clinical inference is that the reduced cardiopulmonary reserve imposed by COPD – a disease often marked by pulmonary hypertension and right ventricular dysfunction – renders the circulatory system less capable of coping with the effects of an MI, Dr. Kohei Wakabayashi said at the annual scientific sessions of the American Heart Association. Read article

Two e-Learning Events This Week: The Empowered Patient and Starting a Support Group

Mon, 24 Jan 2011 19:29:48 GMT

PHA Classroom, our interactive e-learning center for patients and family members, will be holding two live e-learning events this week. All you need is an Internet and a phone connection.

Tuesday, January 25
8:00 p.m. ET
How to Start a Support Group
Debbie Castro and Sophie Klein from PHA
Register now

Wednesday January 26
12:00 noon ET
The Empowered Patient: Nurturing Partnerships with your Medical Professionals to Get the Best Care Possible
Deborah Levine, MD, University of Texas Health Science Center at San Antonio
Register now

For Medical Professionals: Free CME/CEU Live Webinar Thursday on PH in Systemic Sclerosis

Mon, 24 Jan 2011 19:22:17 GMT

PH in Systemic Sclerosis
January 27, 6-7 p.m. ET
Virginia Steen, MD

This live PHA Online University webinar will feature Dr. Virginia Steen, a Professor of Medicine at Georgetown University and a member of the PHA Scientific Leadership Council. Dr. Steen will present on Pulmonary Hypertension in Systemic Sclerosis. Those attending this presentation will be eligible for CME/CEU credits with the completion of a post test and evaluation.

Medical professionals: Register now

Patient Voices: Rare Diseases - Listen to Diane Ramirez Speak About PH

Mon, 24 Jan 2011 16:54:56 GMT

(The New York Times) - Living with any disease can be a trial, but patients with rare conditions face a host of uniquely difficult challenges. Simply getting an accurate diagnosis can be an enormous task, and many with poorly understood illnesses struggle with isolation and loneliness. Here six men and women talk about how their lives have been most affected by rare conditions. Listen to Diane Ramirez speak about PH. Read article and listen to recordings

Being a Caregiver From Afar Can Pose Challenges

Mon, 24 Jan 2011 16:18:00 GMT

(TCPALM) - Despite crippling arthritis, pulmonary hypertension and the autoimmune disorder lupus, what my 82-year-old oxygen-dependent mother says she wants most is to live with her two 10-year-old Himalayan cats and die in her own house. But figuring this out isn't easy, particularly long distance. Read article

A Good Book Helps Parents Bond With Newborns in NICU

Tue, 18 Jan 2011 21:36:48 GMT

1/11/11 (parentdish.com) - "Alyssia was in an incubator in the middle of the room, with tubes and all sorts of things going on around her," Mélissa Asselin, mother to the now 5-year-old who was born with pulmonary hypertension, tells Healthland. "Reading gave us a way to stay close. I couldn't talk to her or touch her, but she heard the sound of my voice. That simple activity helped me get through the situation, and I have beautiful memories of the experience." Read article

PH Medication on its Way for Boy in Australia

Tue, 18 Jan 2011 16:28:32 GMT

1/14/11 (Fraser Coast Chrinicle) - Julian Summers has defied the odds for seven years but when flood waters separated him from life-saving medication his family faced their toughest challenge yet. Read article

5 Upcoming PHA Webinars, Including a PH Treatments Update

Tue, 11 Jan 2011 21:26:40 GMT

PHA has five webinars coming up in the next month on the PHA Classroom schedule, including an update on PH treatments and how to get the best care possible from your medical professionals. Check them out and register today!

Newly Diagnosed? What You Need to Know
Wednesday, January 19, 1:00 p.m. ET, Webinar

If you or someone you know was recently diagnosed with pulmonary hypertension, this free webinar is for you. Louise Durst, RN, has been working with pulmonary hypertension patients for nearly two decades. During this call, she reviews the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease.

How to Start a Support Group
Tuesday, January 25, 8:00 p.m. ET, Webinar

Want to meet another pulmonary hypertension patient in your town or region? Not sure where to start looking? PHA can help you find other patients and bring them together to start a dialogue of support and education. At its simplest, a support group can be defined as two or more people. We're sure we can help you find at least another patient, if not more, to meet face to face for support.

The Empowered Patient: Nurturing Partnerships with your Medical Professionals to Get the Best Care Possible
Wednesday, January 26, 12:00 p.m. ET, Webinar

Learn how to get the most out of time-limited medical appointments. Deborah Levine, MD, will discuss strategies for communicating effectively with medical professionals, and methods for opening the channels of communication between your primary care provider, PH team and other specialists.

PH Treatments: What's on the Horizon
Tuesday, February 1, 3:30 p.m. ET, Webinar

It is an exciting time for PAH research. Over the past 13 years, eight PAH therapies have been approved by the FDA! In this session with Dr. Michael McGoon, learn about the new treatments available and treatments currently in the pipeline.

Special Events 101: Planting the Seeds for a Successful Spring Fundraiser
Thursday, February 3, 3:00 p.m. ET, Webinar

Planning to organize a fundraiser, but need some additional information and advice? This is the perfect opportunity to find out what it takes to plan a special event and get your questions answered! This presentation will provide an overview of "Event Planning 101" and will feature seasoned special event planners who will speak from their experiences.

New Diagnostic Tool To Detect Complications In Lung Transplant Patients

Tue, 11 Jan 2011 17:45:36 GMT

1/2/11 (Medindia) - University of Michigan researchers have developed a new diagnostic tool that could help predict a fatal complication in lung transplantation patients. In the complication known as bronchiolitis obliterans syndrome (BOS), scar tissue builds up in the lungs and chokes off the ability to breathe. Read article

What Pulmonary Hypertension is -- And Why You Should Know

Mon, 10 Jan 2011 19:21:00 GMT

1/5/11 (LancasterEagleGazette) - Many patients with diseases such as sleep apnea, lupus or rheumatoid arthritis are at risk for pulmonary hypertension. This disease might also affect people with liver disease, blood clots in their lungs, HIV and other lung ailments. PH is different from what most people think of when they hear "hypertension." Read article

EU Agency to Review Other PAH Drugs

Thu, 23 Dec 2010 16:07:41 GMT

12/16/10 (the heart.org) - The European Medicines Agency is to review the hepatotoxic profile of two other endothelin receptor antagonists (ERAs) for the treatment of pulmonary arterial hypertension following the withdrawal last week of Pfizer's ERA sitaxentan (Thelin) due to two cases of fatal liver injury linked to the drug. Read article

Happy Holidays and Thank You

Wed, 22 Dec 2010 21:18:22 GMT

Happy Holidays from the Pulmonary Hypertension Association. All of us at PHA wish you and yours a holiday season and new year filled with many good things. We are honored to be in the fight against PH with you.

View our holiday card

New Email Group Launches for PHA Special Events Community

Wed, 22 Dec 2010 18:14:00 GMT

This week, PHA’s Special Events program launched an email group called the Special Events Forum. Anyone interested in or currently planning a PHA special event fundraiser is encouraged to join! Use the Forum to share and receive fundraising tips, advice and encouragement.

Join PHA’s Special Events Forum (requires a free Google account)

Pfizer Stops Clinical Trials Of Thelin® And Initiates Voluntary Product Withdrawal

Fri, 10 Dec 2010 16:17:15 GMT

(Bloomberg) - Pfizer Inc. is recalling its lung drug Thelin worldwide and halting trials of the medicine after it was linked to potentially life-threatening liver damage. No new patients should be prescribed Thelin and those receiving it should be transferred to other therapies, Pfizer, based in New York, said in a statement today. Read article

What Could You Do with $5,000?

Tue, 07 Dec 2010 21:07:20 GMT

PHA wants to help you receive a grant of up to $5,000 to help raise awareness of pulmonary hypertension or develop or expand services for patients. Applications for a Tom Lantos Innovation in Community Service Awards are being accepted until Jan. 3, 2011.

More information is available online, including a secure online application. Learn more and apply now

Feel uncertain? Need help? Contact Adrienne@PHAssociation.org. Applying is easier than you think!

Blog Launches for Young Adults with Pulmonary Hypertension

Tue, 07 Dec 2010 21:00:00 GMT

Generation Hope, PHA’s community for young adults, now has a blog! Read about Jenny and friends, who tackle all the adventures of life as 20 and 30-somethings while living with PH.

Visit the Generation Hope Blog

FDA Clears Investigational New Drug Application for Clinical Trials With NITROSYL™ Inhaled Nitric Oxide System

Tue, 07 Dec 2010 17:26:26 GMT

12/2/10 (PR Newswire) - GeNO LLC announced today that the U.S. Food and Drug Administration has cleared its Investigational New Drug application for a clinical trial with the GeNO NITROSYL™ (Inhaled Nitric Oxide) System for treatment of pulmonary hypertension in patients with Pulmonary Hypertension Secondary to Idiopathic Pulmonary Fibrosis, (PH-IPF WHO Group 3) and Pulmonary Arterial Hypertension, (PAH, WHO Group 1). Read article

Nigeria Records First Devised Closure of Hole in the Heart

Tue, 30 Nov 2010 22:08:17 GMT

11/24/10 (Vanguard) - A Nigeria hospital, for the first time in the history of West Africa, has recorded a land mark achievement in the field of medicine when it successfully pioneered the first devised closure of a hole in the heart called “Patent Ductus Arteriosus” (PDA) by non surgical intervention in a three-year-old child. PDA is a congenital heart disease commonly seen in early childhood and can lead to lung congestion, pulmonary hypertension and enlargement of the heart. Read article

Two Events Today: Get Your Idea Funded and Transitioning Your Child to Adult PH Care

Thu, 18 Nov 2010 16:10:34 GMT

We have two live e-learning events for you to participate in today:

Have an Innovative Idea? Learn How to Get it Funded
Thurs., Nov. 18, 3 p.m. ET
Register for Lantos grant awards webinar

Parents Telephone Support Group: Transitioning Your Child from Pediatric to Adult PH Care
Thurs., Nov. 18, 8:30 p.m. ET
Learn more and get call in information

Today is Call-In Day for Scleroderma Bill

Wed, 17 Nov 2010 15:15:36 GMT

If you're not heading over to PHA's Congressional Luncheon on Capitol Hill today, or even if you are, there are other ways you can get involved in encouraging your Members of Congress to support legislation important to the pulmonary hypertension community.

First, if you haven't already, send a message about the Tom Lantos Pulmonary Hypertension Research and Education Act.

Second, make a call to your senators today about the Scleroderma bill making its way through Congress. The House of Representatives has already passed the Scleroderma Research and Awareness Act, now there is a big push for passage in the Senate before Congress leaves for the session.

Recording: Pulmonary Hypertension on Faith Middleton Show

Wed, 17 Nov 2010 15:01:07 GMT

If you weren't able to catch the Faith Middleton Show on Connecticut Public Radio on Monday, you can now listen to the recording online.

Watch PHA Staff on Good Morning Washington on Wednesday

Tue, 16 Nov 2010 20:39:05 GMT

If you're in the Washington, D.C., area, watch Good Morning Washington on Wednesday, Nov. 17 to see Debbie Castro, Director of Volunteer Services, and the entire PHA staff give the morning greeting.

Good Morning Washington
ABC Channel 7
Wednesday, Nov. 17
Greeting around 6:10 a.m.

Store Special for PHA Members

Tue, 16 Nov 2010 20:35:08 GMT

PHA members receive a special discount each quarter on featured PHA Store items. View this quarter’s special: the new PHA logo pin.

Members-only store special | Join PHA

Spread PH Awareness on the Web Tuesday

Mon, 15 Nov 2010 20:32:40 GMT

Pulmonary Hypertension “Blogging" Day 2010
World Wide Awareness — On the Web November 16

Help spread the word about PH online. PH “Blogging” Day is November 16 and it’s a great way to get involved — even if you don’t have a blog!

Five Ways to Participate

Mention PH in your Facebook status
Tweet about PH
Email your friends and family with information about PH and the link to the About PH page
Submit your story to PHA through the Our Journeys program
Share your PH journey on your blog

If you have time for more, you can even consider making daily posts during November.

Count me in! Email Awareness@PHAssociation.org so PHA can count YOU on November 16.

Fresno County, Calif., Declares November PH Awareness Month

Mon, 15 Nov 2010 20:08:00 GMT

Perry Mamigonian, Josh Daniels and Brenda Vang spoke at a recent meeting as they received a proclamation from Fresno County declaring November PH Awareness Month. Watch the video

Lung Disease Common in Adolescents With HIV in Zimbabwe

Mon, 15 Nov 2010 14:42:20 GMT

11/13/10 (aidsmap) - Dr Ferrand presented results of a cross-sectional survey of 116 consecutive older children and adolescents with HIV presenting for care at two HIV clinics in Zimbabwe. Among these patients 66% had chronic cough, 21% had a restricted ability to exercise as a result of reduced lung function, 40% had hypoxia, 44% had reduced lung function and 7% had pulmonary hypertension. Read article

Tiny San Diego Biotech Will Resume Work on Experimental Lung Disease Drug

Fri, 12 Nov 2010 19:51:35 GMT

11/11/10 (The San Diego Union-Tribune) - An infusion of $20 million from investors and a potentially lucrative partnership with a major pharmaceutical company is breathing new life into Aires Pharmaceuticals, nearly a year after the San Diego drug developer ran out of money and essentially shut down. Aires said Thursday that Novartis had acquired the option to obtain the worldwide rights to Aironite, the company’s experimental treatment for primary pulmonary hypertension, in a deal worth up to $250 million if certain milestones are reached. Read article

Two e-Learning Events this Week: Medicare Part D and Keeping the PH Blues Away

Tue, 09 Nov 2010 17:57:44 GMT

PHA has scheduled three e-learning events for PH Awareness Month, two of which are this week. Check them out!

Medicare Part D and Enrollment: Choosing a Plan that Works for You
Wednesday, Nov. 10, 4:00 p.m. ET
with PHA’s Margaret Beardsworth and representatives from the Medicare Rights Center and Caring Voice Coalition

Keeping the PH Blues Away
Thursday, Nov. 11, 2:00 p.m. ET
with Stephen Mathai, MD, MHS, Johns Hopkins University School of Medicine

Have an Innovative Idea? Learn How to Get it Funded
Thursday, Nov. 18, 3:00 p.m. ET
with Adrienne Dern, PHA’s Senior Vice President, and winners of 2010 grant awards

Learn more and register for one or all of these events | Watch recordings from past e-learning events or PHA’s 2010 Conference

November is Pulmonary Hypertension Awareness Month

Tue, 09 Nov 2010 17:52:24 GMT

How are you getting involved? Learn more on the various ways you can spread awareness about PH this month on our Awareness Month site.

Want to share your story with your local media? We have a template press release (rich text format) for you to customize and an Online Media Guide to get you started.

And don't forget next week we have PH Blogging Day on Tuesday, Nov. 16 and PHA's Congressional Luncheon on Wednesday, Nov. 17.

Questions? Contact Katie Kroner at Awareness@PHAssociation.org.

Elementary Teacher in California Raises Awareness about PH

Tue, 09 Nov 2010 17:30:50 GMT

11/8/10 (Coronado Patch) - Jennifer Nelson, a teacher and mother of a child with a PH, speaks out about the disease and finds support from the community. November is National Pulmonary Hypertension Awareness Month, and her school held an assembly to show their support for the Nelson family. Read article

CHEST: Clinical Changes Signal Prognosis in PAH

Tue, 09 Nov 2010 17:27:33 GMT

11/5/10 (Medpage Today) - An increase in New York Heart Association functional class or at least 15% reduction in Six-Minute Walk Distance predicted lower likelihood of major event-free survival at two years in the REVEAL study. Read article

Opera Singer Thrives After Double Lung Transplant

Wed, 27 Oct 2010 21:51:57 GMT

(ABC News) - Opera singer Charity Tillemann-Dick, 26, took the stage Tuesday to open this year's TEDMED conference in San Diego with an exquisitely sung aria. The conference, an event that examines novel approaches to medicine and healthcare, marks an important anniversary for the singer -- a year ago to the day she awoke from a month-long coma following a difficult double lung transplant. Read article

Breakthrough in Diagnosis and Treatment of Pulmonary Hypertension

Wed, 27 Oct 2010 18:46:00 GMT

10/25/10 (Toronto Sun) - A Canadian researcher may have discovered a breakthrough diagnosis - even a cure - for pulmonary hypertension. New research indicates a protein, dubbed PIM-1, is high in patients with the condition. The higher the PIM-1 levels, the more severe the patient's pulmonary hypertension, which narrows and scars pulmonary arteries and can stress the heart. Read article

UK PH Patient Beat the Odds to Succeed in Business With "Joey Pouch"

Thu, 21 Oct 2010 12:32:33 GMT

10/6/10 (Business Cornwall) - A Truro entrepreneur, diagnosed with PH nine years ago at the age of 20, has been named a semi-finalist in the 2010 Barclays Trading Places Awards, which recognises people who have beaten the odds to succeed in business. Daniel Male, who designs and creates pouches to conceal medical devices, is now hoping to win a share of the £50k prize package just six months after setting up on his own. Read article

PH Patient Praises Work of University of Maryland Medical Center’s Doctors

Thu, 14 Oct 2010 10:23:39 GMT

9/28/10 (University of Maryland Medical Center ) - In 2006, Frank Hetrick, 78, of Annapolis, MD was diagnosed with pulmonary hypertension at a local hospital. After his diagnosis, his cardiologist told him he only had six months to live. With the help of his daughter, Hetrick was referred to Dr. Myung Park, a cardiologist and pulmonary hypertension expert at the University of Maryland Medical Center. Much to Hetrick’s surprise, Dr. Park reassured him that he was not going to die in six months, and put him on a successful course of medical treatment. Read article

Community of Angels Meets to Defeat Pulmonary Hypertension

Tue, 12 Oct 2010 18:30:08 GMT

10/11/2010 (Green Prophet) - Israeli and Turkish delegations joined European and American counterparts in Spain to draw attention to environmental factors causing a killer disease. Strengthening community will be an integral part of a sustainable future. A “community of angels” referred to the delegates from more than 20 countries in the European Union, Israel, Turkey and the United States who convened in Castelldefels to discuss Pulmonary Hypertension. The European Pulmonary Hypertension Association conference took place just outside of Barcelona from Sept. 18-20th. Read article by Dr. Yosef Gotlieb

Updated U.S. Product Labeling for Veletri (Epoprostenol for Injection)

Wed, 06 Oct 2010 20:33:29 GMT

(PR-USA) - Actelion today announced that the U.S. Food and Drug Administration (FDA) has approved additional in-use conditions for administration of Veletri®, an improved formulation of epoprostenol. Dr. Vallerie McLaughlin, Professor of Medicine and Director of Pulmonary Hypertension at the University of Michigan, commented: "Patients with more advanced PAH struggle daily with debilitating symptoms, such as shortness of breath, chest pain and chronic fatigue. I expect the improved convenience of Veletri's preparation and storage flexibility to significantly benefit these patients and make a difference in their everyday life." Read article

PH Awareness Month - Learn Ways You Can Get Involved

Tue, 05 Oct 2010 18:01:14 GMT

Climbing Toward a Cure: Getting Involved During Awareness Month 2010
Wednesday, October 6
2:30 p.m. ET
Webinar – phone AND web login

PH Awareness Month this November is our chance to show the world what a community like ours can do when we’re committed to finding a cure.

This year’s Awareness Month theme, Climbing Toward A Cure, was inspired by the Kilimanjaro climb of Drs. Raymond Benza and Robert Franz and Jessica Lazar, PA, and the 17 unity walks that together raised more than $130,000 for PH research and PHA programs. When you speak out during Awareness Month, you become part of the PH mountain climbing team.

Find out how you can get involved this November. Your efforts will lend a hand to other PH climbers across the country and around the world.

PHA on the Road in Dallas, Texas This Saturday

Wed, 29 Sep 2010 20:06:00 GMT

PHA on the Road: PH Patients and Families Education Forum will be coming to Dallas, Texas this Saturday, October 2. On-site registration will be limited so pre-registration is advised. Online registration for the forum has closed, but you can still pre-register by calling 301-565-3004 x764 until 3:00 p.m. ET on Thursday, September 30.

Webinar on Getting Involved in PH Awareness Month

Wed, 29 Sep 2010 13:57:43 GMT

Webinar - phone AND web login
Wednesday, October 6, 2:30 p.m. ET
PH Awareness Month this November is our chance to show the world what a community like ours can do when we’re committed to finding a cure.

This year’s Awareness Month theme, Climbing Toward A Cure, was inspired by Drs. Ray Benza and Bob Franz and Jessica Lazar, PA. Their Kilimanjaro climb and the 17 unity walks the climb inspired raised more than $130,000 for PH research and PHA programs. When you speak out during Awareness Month, you become part of the PH mountain climbing team.

Find out how you can get involved this November. Your efforts will lend a hand to other PH climbers across the country and around the world.

Learn About Side Effects of PH Medications Tuesday

Fri, 24 Sep 2010 15:58:39 GMT

Webinar - phone AND web login
Tuesday, September 28, 2:00 p.m. ET
This is an exciting time for patients with PH. There is a wealth of available, effective, and approved PH medications, and many new experimental medications on the way. In this session Dr. Karen Fagan will explore the side effects that may arise as a result of these treatments.

PHA on the Road in Baltimore/Washington, D.C. Area This Saturday

Wed, 22 Sep 2010 16:35:44 GMT

PHA on the Road: PH Patients and Families Education Forum will be coming to the Baltimore/Washington, D.C., area this Saturday, September 25. On-site registration will be limited so you should pre-register now. Online registration for the Baltimore/Washington, D.C. forum has closed, but you can pre-register by calling 301-565-3004 x764 until 5:00 p.m. ET today.

PHA on the Road will also be coming to Dallas, Texas, next Saturday, October 2. Register now

Working with PH Webinar Tomorrow

Wed, 22 Sep 2010 16:26:23 GMT

Working with PH
Thursday, September 23
7:00 p.m. ET
Webinar - phone AND web login
Does a PH diagnosis mean it’s time to throw in the time clock? Working patients will share their tactics for managing a job and their PH in this live e-learning event.
Register now

Pulmonary Vascular and Right Ventricular Dysfunction in Adult Critical Care: Current and Emerging Options for Management: a Systematic Literature Review

Wed, 22 Sep 2010 16:07:28 GMT

(7th Space Interactive) - Pulmonary vascular dysfunction, PH and resulting right ventricular failure occur in many critical illnesses and may be associated with a worse prognosis. PH and RV failure may be difficult to manage: principles include maintenance of appropriate RV preload, augmentation of RV function, and reduction of RV afterload by lowering pulmonary vascular resistance (PVR). Read article

Cartoons for a Cause - Leslie Polss Illustrates How to Get a Proclamation

Fri, 17 Sep 2010 21:52:06 GMT

Leslie Polss, a pulmonary hypertension patient and cartoonist, illustrates how to get an Awareness Month proclamation in her latest PH-themed cartoon strip.

"Let Me Breathe" - Song Written by J. Paul Adams for Niece with Pulmonary Hypertension

Fri, 17 Sep 2010 21:41:00 GMT

Listen to this song,"Let Me Breathe," a song written by Juno nominated composer and Canadian musician J. Paul Adams for his niece Emily and for all who struggle with pulmonary hypertension. The video includes the words.

Let Me Breathe by J. Paul Adams from phatoronto on Vimeo.

TV Azteca Coverage - En Espanol

Fri, 17 Sep 2010 21:35:16 GMT

Participate in National Congressional Call-in Day Wed., Sept. 15

Wed, 15 Sep 2010 19:47:32 GMT

Help find a cure for scleroderma. PH is a common complication in scleroderma patients. Tomorrow, Wednesday, September 15, contact your Members of Congress and encourage them to support the Scleroderma Research and Awareness Act.

Take action

Christie Breault Shares Her Story on the Today Show

Wed, 15 Sep 2010 19:41:55 GMT

When Becky Walker wrote a letter to the Today Show about her good friend Christie Breault (second from right with Kathie Lee Gifford on her right) and Christie’s story as a long-term pulmonary hypertension survivor, she had no idea that a few months later, she and Christie would be whisked to New York City to appear live on the show’s “Everyone Has a Story” segment.

Read the full story | Watch the video | Find resources on how you can help raise awareness

Catch PH Patient Christie Breault on the Today Show Thursday!

Tue, 31 Aug 2010 15:36:00 GMT

Christie Breault, a pulmonary hypertension patient, will be featured in the "Everyone Has a Story" segment with Kathie Lee & Hoda on the Today Show, this Thursday, September 2. Christie’s friend Becky nominated her, and Monday they learned that Christie will be featured on Thursday’s show.

Hear Christie and Becky learning the exciting news on the Today Show clip below. Plus, be sure to check your local NBC listings and catch them Thursday morning on the Today Show!

Advance to 8:35 mark -- wait for the video to download up to that mark then drag the arrow or click on the spot you want on the progress bar at the bottom.

Visit msnbc.com for breaking news, world news, and news about the economy

Check back regularly for more details

Toddler Becomes Youngest in World Implanted with Artificial Lung

Fri, 27 Aug 2010 18:25:19 GMT

8/26/10 (ABC News) - Owen's parents thought his fever and fussiness were just signs of a mid-June cold - until he collapsed while on a family shopping trip. Doctors diagnosed Owen, who was one-year-old at the time, with pulmonary arterial hypertension. Read article

Actelion Pharmaceuticals Announces FDA Approval of Brand Name for Commercially Available VELETRI® (epoprostenol for injection) for Pulmonary Arterial Hypertension

Wed, 25 Aug 2010 19:34:40 GMT

(PRNewswire) - Actelion Pharmaceuticals US, Inc., today announced that the U.S. Food and Drug Administration (FDA) has approved the brand name VELETRI® for the company's epoprostenol for injection therapy. VELETRI has been commercially available since April 2010 as Epoprostenol for Injection for the treatment of moderate to severe pulmonary arterial hypertension (PAH) and PAH associated with the scleroderma spectrum of disease. Actelion plans to release VELETRI-labeled product by early fourth quarter of 2010. Read article

Watch News Video of Lil Long's Test Swim in the Mississippi River - A Tribute to Her Friend

Mon, 23 Aug 2010 22:40:41 GMT

Lil Long plans to dive into the Mississippi River with the goal of swimming to the other side to raise funds and awareness of the disease that took her friend. Despite battling PH symptoms herself, Long, 54, believes she can make it across the river, estimated to be about a mile from bank to bank where she plans to enter the water. Watch a CBS news video of her test swim.

Brave Natalie To Walk Miles In Aid Of Her Charity

Mon, 23 Aug 2010 22:08:48 GMT

8/21/10 (Scotsman.com - Scotland) - Nine-year-old Natalie is a rare childhood sufferer of Primary Pulmonary Hypertension. Tomorrow she will take part in her annual walk - Natalie's Walk - which was set up by her gran, Helen Archibald, to raise funds for the Pulmonary Hypertension Association and Great Ormond Street Hospital in London, where Natalie has been treated since her diagnosis three years ago. Read article

Pucker Up Record Attempt

Thu, 19 Aug 2010 17:25:05 GMT

(Times Online - New Zealand) - Blue lips could be a sign someone has pulmonary hypertension, but this weekend it’s more likely to show they’re about to kiss their way into the record books. Kiwis are joining people from 28 other countries in a new Guinness World Record attempt. For more information, log onto PuckerUp4PH. Read article

Potential Treatment For Pulmonary Hypertension

Fri, 13 Aug 2010 22:05:33 GMT

(Medical News Today) - Researchers in the Faculty of Medicine & Dentistry at the University of Alberta are one step closer to a treatment for PAH. Read article

e-Learning: Working Media into Your Event

Wed, 11 Aug 2010 21:07:06 GMT

Thursday, August 19, 3:00 p.m. ET, Webinar

The most effective media coverage about PH includes personal stories — your stories. Media coverage can increase your community’s awareness of pulmonary hypertension and their involvement in your event. Learn about the advantages of working with the media to share the story behind your special event. Register now

Upcoming PH Events Outside the U.S.

Wed, 11 Aug 2010 21:01:00 GMT

PH events are coming up in Spain, France, South Africa and Vancouver! If you’re in the area, check our calendar for details

New Family Programming for PHA on the Road

Wed, 11 Aug 2010 20:55:00 GMT

This year's PHA on the Road forums in Dallas, Texas, and the Baltimore/Washington, D.C. area will feature a session entitled “Caring for a Child with PH (Information for Parents).” Both forums will also have a “Kids’ Room” with activities and adult supervision while sessions are in progress. Learn more about family programming

Watch the Conference Video!

Thu, 05 Aug 2010 14:39:00 GMT

Get a taste of the Conference experience with the video from our 9th International PH Conference in June in Garden Grove, Calif.

Website Discoveries by Kathyrn Frix: Preparing for Emergencies

Thu, 05 Aug 2010 14:35:08 GMT

Emergencies don’t give you a heads up so you can prepare. They emerge and you react. This week, I found resources to help you prepare for PH emergencies and have the peace of mind that being prepared can provide. Read more

Lend Your Lips for a Cure!

Tue, 03 Aug 2010 19:34:19 GMT

PuckerUp4PH is circling the globe again… PHA United Kingdom is once again spearheading the international PuckerUp4PH campaign, and you can be part of raising PH awareness and setting a Guinness World Record! Learn how

PHA Receives Awards of Excellence for Redesigned Website and Newsletter

Tue, 03 Aug 2010 19:30:32 GMT

APEX 2010, the twenty-second annual awards program recognizing excellence in publications, presented PHA with Awards of Publication Excellence for PHA's quarterly print newsletter, Pathlight, and PHA's newly redesigned website. Learn more

PHA is "On the Road" Again

Wed, 28 Jul 2010 17:43:00 GMT

Registration is now open for PHA on the Road events in the Baltimore/Washington, D.C., area (September 25) and Dallas, Texas (October 2). This year's events feature programs for patients, caregivers, parents and children. Register now for this free day of patient education

Do You Know Your Medicare Basics?

Wed, 28 Jul 2010 17:38:32 GMT

Medicare Part A covers inpatient hospital care, Part B covers doctors’ visits and durable medical equipment, and Part D is prescription drug coverage. Our Online Insurance Guide provides additional details and resources about Medicare. Visit the Medicare section

Pfizer's Viagra Weighed by U.S. FDA for Children With PAH

Wed, 28 Jul 2010 15:47:06 GMT

7/27/10 (Bloomberg) - Revatio may be used for children with a rare lung disorder if U.S. regulators can agree on how to test it. Outside advisers to the Food and Drug Administration are set to meet July 29 to evaluate whether Pfizer’s study of Revatio is sufficient to determine its effectiveness in children, the agency said today. Read article

Take Action: Connect Locally with your Members of Congress in August

Tue, 27 Jul 2010 17:25:36 GMT

Share your PH story with your Members of Congress — it’s the most effective way to gain their support for PH legislation. For tips on connecting with your Members of Congress: Go to the District Visit Campaign site

Hot Off the Press: Newly Revised Survival Guide

Tue, 27 Jul 2010 17:22:39 GMT

The newly revised Pulmonary Hypertension: A Patient's Survival Guide is now available. Chapters updated in this Summer 2010 reprint include: "PH: The Other High Blood Pressure," "Who Gets PH?," "PH Treatments: The Basics," "PH Drugs," and "Resources." Order now

Nicky Roberts Tribute Focuses On Pulmonary Hypertension Risks

Tue, 27 Jul 2010 14:26:22 GMT

7/26/10 (The Commercial Appeal) - Lil Long, who suffers from PH, has organized a party set for Saturday in Cleveland, Miss., that will double as a tribute to her late friend Nicky Roberts and a fundraiser for the Pulmonary Hypertension Association. Nicky Roberts died of pulmonary hypertension at age 52 on Sept. 3, 2007. Read article

12-Year-Old & His Dad Break Speed Record For States' High Points for PH Awareness

Tue, 27 Jul 2010 14:14:43 GMT

7/21/10 (Daily Camera) - Though he's only 12 years old, Boulder alpinist Matt Moniz has climbed through plenty of steep rock, snow and ice on his way to the summits of a couple of 20,000-foot peaks. For Matt, the 50 in 50 goal was another adventure that helped raise awareness and money for Pulmonary Arterial Hypertension. Matt has taken up the cause because his best friend, Ian Hess, has PAH. Read article

Young Woman In England Recovering From Double Lung Transplant

Thu, 22 Jul 2010 15:44:48 GMT

(Lancashire Telegraph) - A courageous woman has returned home to her family in Whitefield after battling through a life-threatening double lung transplant operation. Medical experts were left with no choice but to carry out the transplant after medication failed to fend off Laura’s pulmonary hypertension. Read article

e-Learning Event Tomorrow: Event Planning 101

Wed, 21 Jul 2010 17:52:05 GMT

Put the Special in Special Events: PHA Local Event Planning & Fundraising 101
Thursday, July 22, 2010
2:00 p.m. ET
Webinar - phone AND web login

PHA’s Special Events fundraisers are the perfect way to honor the causes near and dear to the PH community; they support essential PH research and PHA patient- and family-serving programs, all while raising much-needed awareness. Whether you are thinking about hosting an event, are currently planning your first fundraiser, or are an old hand at gathering your community together to raise funds and awareness, new and exciting information about PHA’s Special Events program will be presented. We will also offer an inside look at Sphere, our newest resource for online event registration and fundraising. PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

Medical Edge: Pulmonary Hypertension

Wed, 21 Jul 2010 17:14:13 GMT

(KAAL-TV) - Looking for treasures with 6-year-old Ethan is something Lyn Repsher thought would never happen when she was diagnosed with PH eleven years ago. "You're looking at your future and you're thinking you're going to have a family and suddenly you're diagnosed with something that's going to change you're perspective on all that," she says. For years, Lyn dealt with treatment that involved i-v delivery of medicine through a pump she had to carry with her 24 hours a day. But now, thanks to drugs originally marketed for Erectile Dysfunction, she's done with all that. "One of the drugs that was reformulated for Pulmonary Hypertension was Viagra," says Dr. Charles Burger of the Mayo Clinic. Read article

Dangers Associated With Sleep Apnea

Wed, 21 Jul 2010 17:12:03 GMT

(Helium) - Sleep apnea is a serious and potentially dangerous health condition wherein overly relaxed muscles block your throat while you sleep and prevent oxygen from getting to your lungs. Recurrent sleep apnea can lead to pulmonary hypertension. Read article

Girl, 9, Remains Playful Despite Pulmonary Hypertension

Wed, 21 Jul 2010 17:09:47 GMT

7/14/10 (STLtoday.com) - Nine-year-old Madison DeClue's heart had grown 3 or 4 times its normal size. A little more than a year ago, she experienced right heart failure. One last treatment for her PH remained. She needed two new lungs.
Read article

PHA Parents Telephone Support Group Monthly Meeting This Thursday

Tue, 13 Jul 2010 17:36:52 GMT

A toll-free telephone support group for caregivers of children with PH. This hour-long conference call offers PH parents across the U.S. the chance to connect in real-time for support, encouragement and information sharing.

Call schedule:
Next call: Thursday, July 15, 8:30 p.m. ET/5:30 p.m. PT
Calls will be held on an on-going basis on the third Thursday of every month at 8:30 p.m. ET/5:30 p.m. PT

Instructions to call in:
Dial toll-free from the U.S. or Canada: 1-866-740-1260
When prompted, enter access code: 4850777

Data Published on Novartis QT1571 for Treatment of Severe Pulmonary Arterial Hypertension

Tue, 13 Jul 2010 17:32:15 GMT

7/9/10 (pharmiweb.com) - The proof of concept study to assess the safety, tolerability and efficacy of QTI571 (imatinib) in patients with pulmonary arterial hypertension (PAH) was published in the American Journal of Respiratory and Critical Care Medicine. QTI571, a tyrosine kinase inhibitor, was studied in patients with PAH not adequately controlled with currently licensed medications. QTI571 significantly improved exercise capacity and pulmonary haemodynamics compared with placebo in patients with severe PAH. Read press release

Webinar for Caregivers Tomorrow, July 13

Mon, 12 Jul 2010 14:54:24 GMT

My Loved One Has PH: A Caregiver's Toolbox
Tuesday, July 13, 2010
1:00 p.m. ET
Webinar: web AND phone login

Join Mary Bartlett, MS, RN, CS, FNP, for a free, hour-long webinar covering the basics of what every family member and friend should know about pulmonary hypertension, treatment and coping as a caregiver.

Learn more and register for Caregiver webinar

New Resources in PHA's Online Insurance Guide

Mon, 12 Jul 2010 14:47:53 GMT

You can now find three new sections in PHA's Online Insurance Guide:

Check out our newly expanded Financial Assistance section, with links to programs that provide general financial assistance as well as links to drug-specific Patient Assistance Programs.
Find resources, charts and diagrams to help you understand your Medicare coverage in the Understanding & Choosing Your Insurance: Medicare section.
Visit the interactive Patient Victories section to read how patients and caregivers have conquered their personal insurance challenges. Then, leave a comment or share your own victory story.

Researchers Point to Possible Scleroderma-Cancer Link

Mon, 12 Jul 2010 14:37:44 GMT

7/9/10 (HealthDay News) - People with specific antibodies may develop both cancer and a certain type of scleroderma -- an incurable autoimmune disease -- at nearly the same time, new research finds. The finding, from a small study of 23 patients, hints at a possible link between cancer and autoimmune disorders. Read article

Post Conference Update: Over 1,250 Registrants Rode the Wave to a Cure

Fri, 09 Jul 2010 18:55:00 GMT

Record numbers took part in PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions June 25-27. More than 1,250 registrants, including patients, family members, medical professionals, exhibitors and international attendees, spent the three-day weekend immersed in education, uplifting presentations, networking and enjoying the PHriendship and sense of common purpose experienced at Conference.

What's next? Lots!

View Conference photo gallery
Read Conference stories or submit your Conference stories to the Conference Blog or, for the Fall issue of Pathlight, to Conference@PHAssociation.org
Continue the discussion and connect with PHriends on PHA's Facebook page
View the Conference Handout Book (PDF)
Stay tuned - PHA will be adding session recordings later this summer!

July PHA e-Learning Events: Lobby Locally; A Caregiver's Toolbox; Event Planning 101

Wed, 07 Jul 2010 18:20:07 GMT

This month PHA has three exciting e-Learning Events lined up for you...

Lobby Locally! Visit Your Members of Congress without Leaving Your State
Thursday, July 8, 2010
8:00 p.m. ET
Conference call
Call in information: 1-866-740-1260, code: 1231383
Your elected officials work for you. Meeting with them to share your story is the most effective way to gain their support for the Tom Lantos PH Research and Education Act and other PH legislation. In August, Members of Congress work from offices in their states, making the summer a great time to schedule a visit.
Learn more about Lobby Locally conference call

My Loved One Has PH: A Caregiver's Toolbox
Tuesday, July 13, 2010
1:00 p.m. ET
Webinar: web AND phone login
Join Mary Bartlett, MS, RN, CS, FNP, for a free, hour-long webinar covering the basics of what every family member and friend should know about pulmonary hypertension, treatment and coping as a caregiver.
Learn more and register for Caregiver webinar

Put the Special in Special Events: PHA Local Event Planning & Fundraising 101
Thursday, July 22, 2010
2:00 p.m. ET
Webinar: web AND phone login
Whether you are thinking about hosting an event, are currently planning your first fundraiser, or are an old hand at gathering your community together to raise funds and awareness, new and exciting information about PHA's Special Events program will be presented. We will also offer an inside look at Sphere, our newest resource for online event registration and fundraising.
Learn more and register for Special Events webinar

PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

Pulmonary Hypertension Charity Launches Blue Lips Campaign

Tue, 06 Jul 2010 18:20:02 GMT

(Healthcare Republic) - Charity Pulmonary Hypertension Association UK (PHA-UK) aims to encourage over 40,000 people to provide a blue lipstick print of their lips to set a new Guinness World Record. A campaign urging participants to wear blue lipstick to raise awareness of pulmonary hypertension launches with National Kissing Day on Tuesday. Read article

Webinar on Tuesday, July 13 - My Loved One Has PH: A Caregiver's Toolbox

Thu, 01 Jul 2010 20:39:47 GMT

My Loved One Has PH: A Caregiver's Toolbox
Tuesday, July 13, 2010 1:00 p.m. ET
Webinar - web login AND phone call

PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

Tezosentan Does Not Prevent Bypass-Related Right Ventricular Failure in PH Patients

Wed, 30 Jun 2010 13:35:15 GMT

June 29, 2010 (Doctor's Guide) - Administration of an endothelin receptor blocker does not lessen rates of right ventricular failure provoked by cardiopulmonary bypass in patients with pulmonary hypertension, according to research presented here at the 2010 Annual Meeting of the Canadian Anesthesiologists' Society (CAS). Read article

Golfers Raise $40,000 to Fight PH

Wed, 30 Jun 2010 13:29:01 GMT

6/29/10 (Orange County Register) - More than 100 golfers participated in the Swing 4 the Cure – Wojo PH Golf Classic at the Tustin Ranch Golf Club on Monday to raise money to fight pulmonary hypertension. The event was named in honor of Mission Viejo resident Betty Lou Wojciechowski's husband, Jerry, who died from the lung disease. Read article

PHA Names Actelion Pharmaceuticals Recipient of 2010 Corporation of the Year Award

Tue, 29 Jun 2010 15:40:00 GMT

6/28/10 (CNBC) - PHA and Actelion Pharmaceuticals US, Inc. today announced Actelion has been named the recipient of the 2010 Corporation of the Year Award. The annual award is presented to a company who has shown an outstanding commitment to supporting the PAH patient community and helping to realize the mission of the PHA. Among the highlights of this year's contributions, Actelion provided physicians and other healthcare professionals with the latest information on the diagnosis and management of PAH by supporting PHA's medical education program. Read article

Three Husbands Hit the Heights for PH

Tue, 29 Jun 2010 15:25:55 GMT

(Northants Evening Telegraph) (England) - The husbands of PH patients - who met one another through a PH support group - completed the Yorkshire three peaks challenge, climbing the three highest peaks in the Pennines in 12 hours to raise money for the Pulmonary Hypertension Association. Read article

From Garden Grove TV3: Opening Day Coverage of the PH Conference

Tue, 29 Jun 2010 13:47:59 GMT

This Garden Grove Channel 3 news segment features interviews with Dr. Frantz, Dr. Benza and Jessica Lazar, who discuss the Path to a Cure climb as well as the importance of raising PH awareness. The segment also describes PH and includes interviews with trustee chair Carl Hicks, PH patient Evette Britton, who describes her battle with the disease, and PH advocate Diane Ramirez. View the news segment

Woman Battles Disease in Memory of Fallen Family

Sun, 27 Jun 2010 20:08:02 GMT

(Orange County Register) - For more than a quarter century, an incurable disease has attacked Betty Lou Wojciechowski's family. In 1983, her 4-year-old son, Matthew, died. In 1997, her 24-year-old son, Michael, died. Ten years later, her husband, Jerry, die. PAH has taken half of Wojciechowski's family in 27 years. These days, the just-retired teacher, 61, fights for a cure. "I can't do anything about my kids dying or my best friend and husband of 37 years dying, but it gives me hope that I can help others," she said. Read article

5 new posts in the Conference Blog!

Sun, 27 Jun 2010 19:51:53 GMT

There are 5 new posts in the Conference Blog! Read about the Hallway of Hope, "Ups and Downs of Living with PAH", "A Seat at the Kitchen Table": founders’ dinner and fashion show, a newly diagnosed PH patient who met other PHers for the first time and meet the Who's Who in the next generation of PHA leaders.

Read the Conference Blog at:
www.PHAssociation.org/Conference/Blog

6 new posts in the Conference Blog!

Sat, 26 Jun 2010 18:09:31 GMT

There are 6 new posts in the Conference Blog! Read write-ups about "Creative Connections" skills-building session, Patient/Family Led Sessions, Conference Opening Keynote, Conference meet-ups and reports on Conference experiences.

Read the Conference Blog at:
www.PHAssociation.org/Conference/Blog

PH Interview on SIRUS "Doctor Radio" June 27

Sat, 26 Jun 2010 14:05:36 GMT

PHA President, Rino Aldrighetti, and SLC Chair, Dr. Vallerie McLaughlin, appeared on Doctor Radio, a SIRIUS program. The show airs Sunday June 27 at 6:00 a.m. EST. Tune in on SIRIUS channel 114 or XM 119.

Taylor and Sarah...

Sat, 26 Jun 2010 13:57:57 GMT

via Empowered by hope - a PHA diary by Rino on 6/22/10

Taylor and Sarah. Two little girls on different coasts..

On June 5, 2010 the Caffrey family hosted The Race 2 Cure PH - The Taylor Caffrey Memorial 5K Run/Walk in Anaheim Hills. Nearly 600 runners and walkers registered and many more came to show their support..

Shari and Michael had lost Taylor on September 19, 2009 at the age of 4 1/2 She had been diagnosed with PH in 2008.

Taylor - known to her team as as Coach Tay - was undoubtedly the youngest coach in the history of the Canyon Hills Soccer Association, where she participated with her sister, Brooke.

The family has created a website, TaylorsWish.org/, to keep her spirit and inspiration alive.

Yesterday, Michelle Peek called. I hadn't seen her since I met her and her husband David and their children Sarah and Sarah's little brother, Nathan last October at the New York Walk for PH on Long Island. I had blogged about Sarah and her family shortly after the event.

Michelle had a question to ask but when she eased into it slowly, I knew there was news.

Did you hear about Sarah?

I hadn't. She told me that Sarah had passed on March 3 at age 7. Another great sadness. Another reminder that as fast as things are moving, they still don't move fast enough.

Syracuse Online reported on Sarah. Thie story included Sarah's dream to ride a bike.

At Christmas, her grandparents bought her a three-wheeled bike. In a photo taken Christmas Eve, she's standing on the pedals, smiling broadly. The straps from her backpack can be seen over her yellow Christmas pajamas.

Michelle told me she is working with their family's church which is organizing an August awareness event in Sarah's memory. PHA will help with that in whatever ways we are asked.

Our condolences to the Caffrey and Peek families and to all who, despite terrible loss to this disease, continue to help others. We share your sadness. We are in awe of your strength and your humanity.

New post in the Conference Blog! Conference Meet and Greet: Connecting the PH Community

Fri, 25 Jun 2010 19:58:46 GMT

View the photo of dozens of conference attendees gathered out by the pool for the Thursday evening Meet and Greet, and read the story by Jeannette Morrill, PH Patient, who interviewed many people about why they came to Conference. Read the Conference Blog entry

Formula For Predicting Survival in Patients With PAH

Thu, 24 Jun 2010 21:12:17 GMT

(The University of Chicago Department of Medicine) - Developed at The University of Chicago, a new regression equation, the PHC calculator, is used to predict survival in patients with idiopathic, familial, and anorexigen-associated PAH. The PHC calculator helps medical professionals prognosticate survival based on cardiac catheterization results at the time of diagnosis. Read article | Access the calculator

Vallerie McLaughlin, M.D., Earns Pulmonary Hypertension Excellence Award

Thu, 24 Jun 2010 15:24:46 GMT

6-17-10 (UMHS Newsroom) - The Pulmonary Hypertension Association and Actelion Pharmaceuticals US, Inc. today announced Vallerie McLaughlin, M.D., of the University of Michigan Health System, as the recipient of the annual PHA Award of Excellence in Pulmonary Arterial Hypertension Care. Read article

New Insurance Resources Available for Patients, Caregivers and Medical Professionals

Thu, 24 Jun 2010 15:18:50 GMT

You can now find two new sections in our Insurance Resources Guide. Check out our newly expanded Financial Assistance section, with links to programs that provide general financial assistance as well as links to drug-specific Patient Assistance Programs.

Visit the interactive Patient Victories section to not only read how patients and caregivers have conquered their personal insurance challenges, but to leave a comment or share your own victory too.

Echocardiographic Assessment of Pulmonary Vascular Resistance in PAH

Thu, 24 Jun 2010 14:58:29 GMT

(7thSpace Interactive) - Echocardiographic ratio of peak tricuspid regurgitant velocity to the right ventricular outflow tract time-velocity integral (TRV/TVI rvot) was presented as a reliable non-invasive method of estimating pulmonary vascular resistance (PVR). Studies using this technique in patients with moderate to high PVR are scarce. Read article

Fighting For Every Breath - Puffs Of Air Saved Preemie

Thu, 24 Jun 2010 14:44:07 GMT

6/21/10 (Daily Inter Lake) - Ashley and Erik Nadeau never expected that their baby would arrive prematurely and end up fighting for breath. At birth, little Wyatt sounded vigorous. “He came out screaming,” Ashley recalled. Shortly afterward, she sensed that her obstetrician’s warning to expect respiratory issues was on target as her baby was placed under an oxygen hood. “From there, things got worse,” she said. “He was grunting for breath.” Read article

Wear Your Hope on Your Sleeve with Generation Hope Apparel

Wed, 16 Jun 2010 19:01:19 GMT

Show your support for Generation Hope, PHA's virtual support group for young adults with pulmonary hypertension, by purchasing one of the T-shirts, hoodies, mugs and more now available for sale in the Generation Hope Café Press shop. Ten percent of each purchase will be donated to PHA. Visit Generation Hope's Café Press shop | Visit the Generation Hope section

Warm Weather Tips for Pulmonary Hypertension Patients

Wed, 16 Jun 2010 18:53:31 GMT

As the weather heats up this summer, it's important to pay close attention to your body’s reaction to warm weather, especially while enjoying the outdoors. Prolonged exposure to heat and sun can quickly cause worsening symptoms of PH. Getting too hot can cause things such as heat exhaustion, heatstroke and dehydration.

Tip #4: On warm summer days, don’t over-extend yourself. Try to avoid physical work during the hottest part of the day. You can rest and stay cool by lying down with a cold towel over your face, or by taking a cool bath or shower.

Safety Affirmed with Echo Contrast Agent

Wed, 16 Jun 2010 18:47:36 GMT

(MedPage Today) - Microbubble contrast agents used in echocardiography don't elevate cardiovascular risk despite lingering doubts, according to a meta-analysis. Read article

Rep. Himes Co-sponsors Pulmonary Hypertension Research Act Thanks to Persistent 435 Campaigner

Tue, 15 Jun 2010 15:48:31 GMT

Dick Tunstall, a member of PHA's grassroots advocacy network, the 435 Campaign, is an example of how persistence can pay off. In October, 2009, Dick met with Representative Jim Himes (D-CT) and requested his co-sponsorship of H.R. 1030, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009, but Dick didn't stop there! After that meeting, Tunstall worked consistently with Himes' office and as a result, on May 24, 2010, Representative Himes co-sponsored the bill.

Thanks to Dick Tunstall and all members of the PH community who dedicate their time to advocate with their Member of Congress about PH, we get one step closer to beating PH every day.

To learn more about the PH Research and Education Act and how you can advocate to your Member of Congress, visit the 435 Campaign page or contact Elisabeth at Advocacy@PHAssociation.org or 301-565-3004 x753.

Grove City Woman Honored by Pulmonary Hypertension Association

Tue, 15 Jun 2010 15:32:36 GMT

Not only has Merle Reeseman given back so much to the pulmonary hypertension community that she is receiving PHA's Outstanding PH Citizen award at our upcoming Conference, she helped spread awareness about PH by sharing the story of her award with her local paper. Learn more about Merle and other PHA Outstanding Member Awardees | Read article | Learn how you can spread PH awareness through the media

Epigenetic Gene Silencing May Hold Key to Pulmonary Hypertension

Tue, 15 Jun 2010 15:13:59 GMT

6/11/10 (Media-Newswire.com) - A rare but fatal disease of blood vessels in the lung may be caused in part by aberrant silencing of genes rather than genetic mutation, new research reports. Pulmonary arterial hypertension, a syndrome characterized by gradual blockage of blood vessels in the lungs, has been linked to genetic causes in a small percentage of patients. But University of Chicago researchers have now found that a form of epigenetics -- the modification of gene expression -- causes the disease in an animal model and could contribute to the disease in humans. Published in the American Heart Association journal Circulation, the finding opens a promising avenue for research into the origins of vascular disorders. Read press release

Conference Power Breakfast: Network with a Medical Professional Topics Announced

Mon, 14 Jun 2010 22:03:54 GMT

The Power Breakfast on Saturday morning at PHA's International PH Conference provides a unique networking opportunity for patients and caregivers to chat with medical professionals in a casual non-clinical setting about topics that interest them most.

Visit the Power Breakfast Topics page to preview topics that various expert medical professionals will be available to discuss during the breakfast.

Eisenhower School Dedicates Its Field to a Former Student Who Died of Pulmonary Hypertension

Mon, 14 Jun 2010 21:52:30 GMT

6/11/10 (TH Online) Iowa - Eisenhower Elementary School named its athletic field "Nick LeGrand Field" Thursday in an emotional ceremony highlighting the life of LeGrand, a Dubuque teenager who underwent two lung transplants before a rare lung disorder claimed his life earlier this year. Read article

Fighting an Invisible Illness: Pulmonary Hypertension

Mon, 14 Jun 2010 21:48:15 GMT

6/12/10 (The Australian) Australia - When Jenny Hodges was diagnosed with pulmonary hypertension at 29 she'd never heard of it, despite her background in nursing. "When I was first diagnosed, I was told that successful treatment meant you're not getting any worse," Hodges says. "It was a pretty scary time, especially as it did actually get worse." Pulmonary hypertension is different from regular hypertension, a raised general blood pressure level. Instead, it occurs when blood pressure increases in the arteries of the lungs, causing strain on the heart and reducing the amount of oxygen that can reach the rest of the body. Symptoms include fatigue, shortness of breath, chest pain and blue lips. Read article

European Respiratory Journal Publishes Phase II Study of Investigational Oral Agent Riociguat in Treatment of Pulmonary Hypertension

Mon, 14 Jun 2010 21:43:30 GMT

6/11/10 (PR Newswire) - Bayer HealthCare Pharmaceuticals, Inc. announced that the study "Riociguat for chronic thromboembolic pulmonary hypertension and pulmonary arterial hypertension: a phase II study" was published online this week by the European Respiratory Journal. Riociguat (BAY 63-2521) is an investigational oral agent being studied for the potential treatment of PH that targets soluble guanylate cyclase (sGC), a receptor for nitric oxide (NO). Read press release

First App for PH Launched

Mon, 14 Jun 2010 21:30:00 GMT

A new Pulmonary Arterial Hypertension Mobile Reference Guide, the first multimedia smart phone application with information on PAH disease, pathology, diagnosis and treatment guidelines for healthcare professionals has just been released by Actelion for iPhones and Blackberrys.

Read more and learn how to download this free resource

...And Another Launching at PHA Conference

The Insights Food & Fluid Daily Diary is a free application created for PAH patients by Gilead and will be available for download to the iPhone®, iPod touch® and iPad™. The app provides a practical tool for patients to track important health information and to share this information with those who are integral to their care, including their doctors.

The application will allow patients to record daily weight, symptoms, and food and fluid intake, generate reports that can be shared with their doctor, access low-sodium recipes and research the sodium content of common foods.

The app will be available at PHA's upcoming Conference. If you're not there, after June 27 go to www.insightsonpah.com to learn more about the app and then click through to download it from Apple's App Store™.

Pastor's Family Raising Money for Transplant

Mon, 14 Jun 2010 21:20:34 GMT

6/8/10 (NWTN Today) Tenn. - A 44-year-old pastor is now fighting for his life as family members pull together the few resources they have in an effort to give Dwayne Maxey a fighting chance. Maxey, who has pastored the Eastside Baptist Church in Martin for the past decade, was diagnosed with pulmonary hypertension in April 2008. His wife describes the condition as high blood pressure of the lung. Since then, his lungs have slowly weakened forcing him onto the organ transplant list. As of Monday, the father of three was moved to the top of the list for a double lung transplant. Without it, the doctors fear he will not live through the summer, according to his wife, Maxey. Read article

PHA Has Done a Lot . . . Because of You!

Thu, 10 Jun 2010 22:39:50 GMT

Your support of PHA has helped make a lot of things happen over the past six months. Watch PHA’s 2010 Mid Year Report to learn how your gift has made a difference in the lives of our community.

Extended a Day - Online Pre-Conference Registration Closes TODAY, June 10 at 3:00 p.m. ET!

Thu, 10 Jun 2010 13:45:00 GMT

Have you registered for PHA’s 9th International PH Conference and Scientific Sessions yet? Online pre-Conference registration closes TODAY at 3:00 p.m. ET.

Please note that PHA will still accept mailed, faxed and phoned-in pre-Conference registrations until June 22 at 3:00 p.m. ET. Onsite registration will be available but we can better plan for your attendance if you pre-register.

See you in California!

New Product Has Potential for Early Diagnosis of Pulmonary Hypertension in Pediatric Patients

Tue, 08 Jun 2010 15:11:39 GMT

6/7/10 (GlobeNewswire) - Pulmo BioTech Inc.has announced that early indications are that its PulmoBind(TM) product candidate has the potential for early diagnosis of pulmonary hypertension (PH) in the pediatric population. Read announcement

Pulmonary Hypertension Association Founder Dorothy Olson Featured in Her Local Paper

Tue, 08 Jun 2010 15:01:43 GMT

6/7/10 (Highlands Today) Sebring, Fla. - Dorothy Olson can't go anywhere without her oxygen tanks. She can't talk for more than 10 minutes without coughing. And being legally blind means she's only able to read through a closed circuit television video magnifier that amplifies texts to about 4 inches on a screen.

Olson is one of about 100,000 people in the United States with pulmonary hypertension disease. It's a rare life-threatening condition with no cure. She was diagnosed in 1978. Back then there wasn't much known about the disease, and patients like her weren't given much hope. "If they diagnosed you with the disease, you were told your have two years to live so get your affairs in order and get ready to die," she said.

Olson didn't let the grim diagnosis bring her down. Instead, she made it her mission to find doctors who knew about the affliction and who were testing out new treatments. For years she visited hospitals, made alliances with other patients and scouted universities and research labs for the latest information on the disease. Ultimately, she (co-)founded the Pulmonary Hypertension Association, a group that links patients with doctors and funds research, in the 1990s.

California Special Events Coordinators Think Outside the Box to Promote Their Event

Fri, 04 Jun 2010 17:22:28 GMT

Event Tomorrow!

Shari and Michael Caffrey are leaving no stone unturned when it comes to promoting "Taylor's Wish," a 5K Run/Walk that honors their daughter Taylor, who recently died from pulmonary hypertension. The Orange County Register published a lengthy article promoting the event and memorializing Taylor, better known as Tay. The Caffreys have also had the opportunity to promote their special event on the Anaheim Angels Billboard and a large billboard above the 405 & 110 freeways in Southern California.

Thanks to Shari and Michael Caffrey and all members of the PH community who dedicate their time to raising awareness and funds, we get one step closer beating PH every day.

Are you in the Orange County area? Learn more and register for the Taylor Caffrey Memorial 5K Run/Walk Saturday, June 5

To learn how you can raise awareness of PH through the media, visit the PHAware Campaign section at or contact Elisabeth at PHAware@PHAssociation.org or 301-565-3004 x753.
To learn more about hosting a special event, visit PHA's Special Events section.

Right Ventricular Ejection Fraction is Better Reflected by Transverse Rather than Longitudinal Wall Motion in Pulmonary Hypertension

Fri, 04 Jun 2010 17:08:27 GMT

6/4/10 (7th Space) - This study showed that regional transverse wall movements provide important information of right ventricle (RV) function in PH. Compared to longitudinal motion, transverse motion at mid RV reveals a significantly stronger relationship with RV ejection fraction (RVEF) and thereby might be a better predictor for RV function. Read study summary

PH Patient to Swim Mississippi River in Memory of Friend Who Died of Pulmonary Hypertension

Fri, 04 Jun 2010 16:55:21 GMT

Lil Long' s best friend Nicky Roberts died of PH in 2007. Lil says they did everything together and now on Sept 4, 2010, the day after the third anniversary of Nicky's death, Lil - who was diagnosed with PH herself shortly after Nicky's death - will swim the Mississippi in her friend's memory. Both women had been event planners and Lil Long will be using her swim to raise funds for PHA. You can help, too

Here's Lil's interview on WXVT Delta News...

Fundraisers to Help Teen Lung Transplant

Fri, 04 Jun 2010 16:45:21 GMT

5/31/10 (Republican Herald) - Family and friends are raising money for New Lungs for Brittany, a fundraising campaign to benefit Brittany Zelinsky. The 18-year-old was diagnosed with a rare lung disease called primary pulmonary hypertension when she was 3 years old. Now a senior at North Schuylkill High School, the petite teenager has surprised doctors by outliving their best projections. But Brittany's malfunctioning lungs and heart cannot work much longer. Brittany's best hope for continued survival is a bilateral lung transplant, medical experts say. Read article

Man Plans Benefit Walk for 10-Year-Old Boy with Pulmonary Hypertension

Fri, 04 Jun 2010 16:37:55 GMT

5/28/10 (Auburn Reporter) Auburn, Wash. - Don Stevenson, Auburn's Pacin' Parson, is preparing to take another walk for a good cause. The 74-year-old Stevenson will embark on a 1,200-mile trip around the state, "Walking Washington for the Breath of Life," to raise awareness and funds for the Children’s Organ Transplant Association (COTA). He is dedicating the walk to 10-year-old Cullen Steele who is anticipating a possible double-lung and heart transplant because of pulmonary hypertension. Read article | Learn about PHA special events

Hepatic Failue, Neonatal Hemochromatosis and Port-Pulmonary Hypertension in a Newborn with Trisomy 21 - A Case Report

Fri, 04 Jun 2010 16:27:57 GMT

5/19/10 (7th Space) - A report shows for the first time the association of liver failure with porto-pulmonary hypertension secondary to neonatal hemochromatosis (NH) in an infant with Trisomy 21. Read report summary

Online Pre-Conference Registration Closes June 9

Wed, 02 Jun 2010 20:55:00 GMT

PHA Pre-Conference Registration Closes Next Week on Wednesday, June 9 at 3:00 p.m. ET

Can you believe there is only a week left to pre-register for our 9th International Pulmonary Hypertension Conference and Scientific Sessions, June 25-27, in Garden Grove, Calif.? If you register by Wednesday, June 9 at 3:00 p.m. ET, you guarantee yourself a speedy onsite check-in process when you arrive at the Hyatt Regency Orange County.

Pre-registration includes:

Personalized packet of Conference resources
Personalized name badge
Conference T-shirt size order
Specialized meal requirement vouchers (if necessary)

If you have any questions about registration, would like a registration form to fax or would like International PH Conference registration brochures mailed to you, contact Registration@PHAssociation.org or 301-565-3004 x764.

Please note that onsite registration will be available but we can better prepare for your attendance if you register in advance. PHA cannot guarantee your T-shirt size will be available if you register onsite.

United Therapeutics Launches Living PAH Program for Patients with Pulmonary Arterial Hypertension

Wed, 02 Jun 2010 20:30:35 GMT

United Therapeutics Corporation and Lung Rx, LLC announced the launch of a nationwide support program for patients who are currently prescribed a United Therapeutics therapy, which includes Remodulin (treprostinil) Injection, Adcirca (tadalafil) tablets or Tyvaso (treprostinil) Inhalation Solution. Learn more about this program and other pharmaceutical and specialty pharmacy company programs for PH patient

Urge Your Senators to Support Increased Funding for National Institutes of Health

Fri, 28 May 2010 23:13:55 GMT

The NIH conducts critical research on pulmonary hypertension that improves the health and saves the lives of PH patients. The funding allocated to NIH has not kept pace with inflation and NIH is not as able to award grants to much-needed medical studies. See how much funding your state got from the NIH in 2009

Take action now! Senator Casey (D-PA), the Senate sponsor of the PH Research and Education Act, is circulating a letter requesting an 11.9% increase in funding for NIH for Fiscal Year 2011. Urge your senators to support NIH research by signing onto this letter before June 3.

Use PHA's talking points to contact your Senators today.

TODAY @3pm ET - Free Update on PH Treatments

Fri, 28 May 2010 15:40:18 GMT

PH Treatments: What's on the Horizon
Friday, May 28, 3:00 p.m. ET
Webinar - web login AND phone call

Join Dr. Ivan Robbins of Vanderbilt University for an update on current clinical trials and PH treatments currently in development, followed by Q & A. An Internet connection and telephone are necessary for participation.

Register Now

PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

TODAY! Telephone Support Group Meeting for Parents of Kids with Pulmonary Hypertension

Thu, 27 May 2010 20:44:47 GMT

New PHA Parents Monthly Telephone Support Group Meetings

First Meeting:
Thursday, May 27, 8:30 p.m. ET/5:30 p.m. PT

Instructions to call in:
Dial toll-free from the U.S. or Canada: 1-866-740-1260
When prompted, enter access code: 4850777

PH parents across the U.S. and Canada are invited to dial in to a toll-free telephone support group for caregivers of children with pulmonary hypertension. The first in a monthly series, this hour-long conference call will give PH parents the chance to connect in real-time for support, encouragement and information sharing.

View more information on PHA's family programs

Opera Singer Charity Sunshine Tillemann-Dick Back on Stage After Double Lung Transplant

Thu, 27 May 2010 20:19:59 GMT

5/25/10 (Fox 8 News) Cleveland, Ohio - A world renowned opera singer is performing for the first time since her double lung transplant. 26-year-old Charity Sunshine Tillemann-Dick developed a condition called pulmonary hypertension, which significantly slowed down her blossoming Opera career. Charity is going to perform publicly for the first time since her operation. She will be singing at the 2010 Patient Experience Summit at the Cleveland Clinic on Wednesday. Read article

Charity performed at two Pulmonary Hypertension Association events in the past - a charity concert at the Kennedy Center and Rockin' for the Cure at the 9:30 Club, both in Washington, D.C. Her grandfather was the late Rep. Tom Lantos, which the PH bill in Congress is named for in memory of his work in support of PH. Take action in support of the Tom Lantos PH Research and Education Act

Blue Kisses Raise Money for Sisters' Charity

Thu, 27 May 2010 18:35:46 GMT

5/21/10 (The Jewish Chronicle Online) United Kingdom - Two sisters have launched a world record charity attempt to raise awareness of pulmonary hypertension, an incurable lung condition which claimed the life of their sister. Prestwich-based teachers Kerry Freedman, 36, and Abbie Kohanzad, 28, donned blue lipstick in support of charity the Pulmonary Hypertension Association - United Kingdom (PHA-UK), which is hoping to get 40,000 blue lipstick prints across 23 countries to smash a Guinness world record. The blue-lipped sisters also completed the 10-kilometre Great Manchester charity run wearing T-shirts featuring a picture of their sister Victoria Lynn, who died of the condition in 2003 aged 20. Blue lips are one of the signs of the rare condition which affects 4,000 people in the UK.

The Pulmonary Hypertension Association (PHA) is joining PHA-UK in their PuckerUp4PH campaign. Be sure to visit the PuckerUp4PH kissing booth at our 9th International PH Conference and Scientific Sessions June 25-27.

Read article | Visit PuckerUp4PH website | Register for Conference

Give a Blue Kiss for Deadly Lung Illness

Thu, 27 May 2010 18:21:37 GMT

5/20/10 (Echo News) United Kingdom - Living with the fear that your heart could give out at any moment is something brave Karen Farminer knows all about. Karen, 50, has been coping for more than 22 years with pulmonary hypertension. Karen will shortly be joining forces with members of 29 pulmonary hypertension patient groups across the world, including the Pulmonary Hypertension Association here in the U.S., to raise awareness of the condition as they try to get more than 40,000 people to provide a blue print of their lips – using blue lipstick – to help set a new Guinness World Record. As well as getting people to “Pucker Up 4 PH," Karen and friends will distribute information on pulmonary hypertension. Read article | Visit PHA-UK's PuckerUp4PH website

Gene Therapy May Be Effective in Treating Pulmonary Arterial Hypertension

Thu, 27 May 2010 18:06:42 GMT

5/18/10 (Physorg.com) Australia - Gene therapy has been shown to have positive effects in rat models of pulmonary arterial hypertension (PAH), according to researchers at the University of Adelaide in Australia. Read article

Downside of Revatio? Possible Hearing Loss

Thu, 27 May 2010 16:24:16 GMT

5/18/10 (MSNBC) - Men who take Viagra (sildenafil) could be at an increased risk for long-term hearing loss, a new study suggests. However, the study only shows an association, and not a direct cause-effect link, and more research is needed to back up the findings. Sildenafil is also used as a treatment for pulmonary hypertension (Revatio). Read article

Nun Rebuked Over Abortion to Save Woman with Pulmonary Hypertension

Thu, 27 May 2010 16:12:02 GMT

5/19/10 (The Arizona Republic) - A Catholic nun and longtime administrator of St. Joseph's Hospital and Medical Center in Phoenix was reassigned in the wake of a decision to allow a pregnancy to be ended in order to save the life of a critically ill patient with pulmonary hypertension. Read article

Free Update On PH Treatments With Dr. Ivan Robbins on Friday

Mon, 24 May 2010 16:51:00 GMT

Webinar for Newly Diagnosed Patients TODAY!

Thu, 20 May 2010 15:13:33 GMT

Newly Diagnosed? What You Need to Know
Thursday, May 20, 3:00 p.m. ET
Webinar - web login AND phone call

If you or someone you know was recently diagnosed with pulmonary hypertension, this free webinar is for you.

Glenna Traiger, RN, MSN, will review the basics of what every pulmonary hypertension patient should know about PH, treatment and coping with this disease. PH patient and Helpline volunteer Merle Reeseman will review PHA's patient services to help new patients benefit from ongoing education and support as they adjust to life with PH.

PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

Make Your Hotel Reservation for PHA’s International PH Conference Now - Rooms are Filling Up!

Tue, 18 May 2010 19:40:58 GMT

With Conference less than six weeks away, hotel rooms at the Hyatt Regency Orange County are booking-up fast. PHA’s special discounted room rates are good until May 31 or until the hotel room block is full – whichever comes first. Don’t forget to make your hotel reservation!

PHA’s 9th International PH Conference will take place at the Hyatt Regency Orange County (11000 Harbor Boulevard, Garden Grove, Calif. 92840). To make your reservation at the Hyatt Regency Orange County, call 1-800-233-1234. Be sure to reference “PHA” when making your reservation.

Once the Hyatt Regency is full, attendees are encouraged to stay at one of the surrounding hotels that are all within walking distance of the Conference. We recommend contacting the Hilton Garden Inn Anaheim/Garden Grove (11777 Harbor Boulevard, Garden Grove, Calif. 92840) at 714-703-9100 or 1-877-HILTON2. Be sure to reference “PHA” when making your reservation.

More information about hotel reservations and room rates | Find a roommate to share the cost of a hotel room or carpool with

Don't forget, online pre-registration for Conference closes June 9. Hotel reservations must be made separately from your Conference registration. Register now!

Bayer Pulmonary Hypertension Drug Riociguat Shows Promise in Long-term Trial

Tue, 18 May 2010 19:25:11 GMT

5/18/10 (Reuters) - Bayer's experimental pill riociguat showed long-term benefits in treating a life-threatening lung disease. After treatment for about 17 months on average, patients suffering from two types of pulmonary-hypertension, CTEPH and PAH, were able to endure more physical exercise than before, according to data posted on the American Thoracic Society's website. Read article

Addition of Ambrisentan to Sildenafil Improves Outcomes for Patients With Progressive PAH: Presented at ATS

Tue, 18 May 2010 19:12:47 GMT

5/18/10 (Doctor's Guide) New Orleans - For people with pulmonary arterial hypertension (PAH) who have progressive disease while on sildenafil therapy, the addition of ambrisentan appears to provide similar safety and effectiveness as ambrisentan monotherapy in treatment-naïve patients, researchers said here at the American Thoracic Society (ATS) 2010 International Conference. Read article

Actelion Pulmonary Hypertension Drug Selexipag Shows Promise in Small Study

Tue, 18 May 2010 19:08:24 GMT

5/17/10 (Reuters) - An experimental drug being developed by Actelion Ltd for a serious lung disorder significantly eased resistance to blood pumping through arteries around the lungs, according to data from a small, mid-stage clinical trial presented on Monday. The Swiss drugmaker is developing selexipag to treat pulmonary arterial hypertension, or PAH, a life-threatening condition in which abnormally high blood pressure in the arteries between the heart and lungs severely compromises the function of both organs. Read article

Sildenafil Improves Quality of Life, Walking Distance in Patients With PAH: Presented at ATS

Tue, 18 May 2010 19:03:51 GMT

5/17/10 (Doctor's Guide News) New Orleans - Treatment of pulmonary arterial hypertension (PAH) with sildenafil significantly improves several quality-of-life measures and walking distance in patients, researchers reported today at the American Thoracic Society (ATS) 2010 International Conference. Read article

Real-World Bosentan Therapy Successful in Pulmonary Arterial Hypertension: Presented at ATS

Tue, 18 May 2010 18:52:35 GMT

5/17/10 (Doctor's Guide News) New Orleans - Real-life experiences in treating patients with pulmonary arterial hypertension with bosentan appears to provide similar efficacy as seen in clinical trials -- despite patients being somewhat older and having more scleroderma, researchers said today at the American Thoracic Society (ATS) 2010 International Conference. Read article

REVEAL(R) RegistryData May Advance Patient Care in Pulmonary Arterial Hypertension

Tue, 18 May 2010 18:48:23 GMT

5/17/10 (PRNewswire) - Actelion Ltd announced today that findings from the REVEAL® (Registry to Evaluate Early And Long-term PAH Disease Management) Registry have confirmed the clinical utility of the REVEAL risk score calculator, a new tool designed to predict 1-year survival in patients with pulmonary arterial hypertension (PAH) according to data presented at the American Thoracic Society's (ATS) Annual International Conference. The predictive tool was developed and validated in patients enrolled in REVEAL, the largest prospective registry in PAH containing data from more than 3,500 patients. Read press release

Pucker Up to Raise Pulmonary Hypertension Awareness

Tue, 18 May 2010 18:36:49 GMT

5/17/10 (Oxford Mail) United Kingdom - A woman wants to help break a world record to raise awareness of a disease which has prevented her having children. Lynsey Pegram, 32, from Witney, suffers from the incurable lung condition pulmonary hypertension (PH) and may soon need a heart and lung transplant. Now she is urging people across Oxfordshire to join an estimated 40,000 others around the world who are donning blue lipstick to raise the profile of one of the main symptoms of the disease. Read article | Visit PHA-UK's PuckerUp4PH site

Pregnant Women Warned of Antidepressants Danger to Their Unborn Child

Tue, 18 May 2010 18:15:11 GMT

5/16/10 (Daily Mail Online) United Kingdom - Women who use antidepressants while pregnant are being warned by health chiefs about the risks to their unborn child. The Government’s medicines watchdog advised doctors there is an increased risk that babies will be born with a rare lung condition if expectant mothers take drugs such as Prozac and Seroxat. The Medicines and Healthcare products Regulatory Agency (MHRA) is recommending they are monitored more carefully because of the risk of developing persistent pulmonary hypertension after birth. Read article

Tibetans Developed Genes to Help Them Adapt to Life at High Elevations

Fri, 14 May 2010 13:50:49 GMT

5/13/10 (Physorg.com) - A detailed understanding of these changes may eventually lead to targeted therapies for common human maladies, including pulmonary hypertension and lung and brain edema, which affect people everywhere. Read article

Pfizer Enters Into Agreement With Ergonex Pharma to Acquire Investigational Treatment for Pulmonary Arterial Hypertension

Thu, 13 May 2010 14:34:16 GMT

5/12/10 (PR Newswire) - Pfizer Inc. and Ergonex Pharma GmbH announced that they have entered into an agreement under which Pfizer will acquire terguride, which is in development as a potential treatment for pulmonary arterial hypertension (PAH). Under the terms of the agreement, Pfizer will support the completion of the ongoing Phase 2 trial for terguride and will have exclusive worldwide rights excluding Japan to commercialize terguride for the treatment of PAH. Read press release

Scientific Sessions at PHA's International PH Conference Advance the Education of Medical Professionals

Wed, 12 May 2010 15:14:13 GMT

PHA's International PH Conference and Scientific Sessions provides a valuable continuing medical education (CME) opportunity for PH-treating medical professionals. On Friday, the Scientific Sessions Inflammation and Growth Factors in PAH will feature a day-long program of advanced professional education for doctors, nurses and other allied health professionals presented by experts in related fields who are applying their knowledge to the study of PH.

Scientific Sessions Highlights:

Scientific Sessions and PH Clinicians and Researchers Dinner Forum - Thursday evening, June 24
PH Resource Network Dinner Forum: Interprofessional Collaboration and PH Team (ideal for your nurse, respiratory therapist or other for allied health professionals) - Thursday evening, June 24
Scientific Sessions - Friday, June 25
Clinical Track Courses - Saturday, June 26 and Sunday, June 27
Over 70 Abstract Posters in the areas of clinical science and research
CME and Nurse CE credit available!

Learn more about the Scientific Sessions
(and the three new clinical track CME courses offered on Saturday and Sunday), and don't forget, pre-Conference registration ends June 9! Register now

Patients: Please pass this information on to your medical professional.

Mount Kilimanjaro Climb Became Breathless Adventure

Wed, 12 May 2010 15:05:11 GMT

More news coverage of our Mount Kilimanjaro climbers!

5/12/10 (Pittsburgh Post-Gazette) - Jessica Lazar climbed a mountain to see what pulmonary hypertension feels like, and that's exactly what happened. "We would grow short of breath tying our shoes," Ms. Lazar said. Ms. Lazar is a physician assistant at Allegheny General Hospital, where she works with Ray Benza on the hospital's cardiovascular clinical care team. In February, Ms. Lazar, Dr. Benza and another physician who works with patients suffering from pulmonary hypertension, Bob Frantz of the Mayo Clinic, joined a group that climbed Mount Kilimanjaro in Tanzania. Read article | Learn more on PHA's Path to a Cure Kilimanjaro Climb section

Blues Busters: Tips for Fighting Sadness and Depression

Wed, 12 May 2010 14:38:49 GMT

Tip # 2: Take a friend up on that dinner offer. It’s no secret that pulmonary hypertension isn't a glamorous illness to live with, but before you decline another invitation, consider this: building and maintaining a social life helps relieve and prevent depression and anxiety. Read more blues-busters

Teenager's Spirit Takes Her Through Rigors of Transplant

Wed, 12 May 2010 14:31:24 GMT

(Pittsburgh Post-Gazette) - On Jan. 13, 2009, Madison Shinaberry, just 13 and very ill with incurable pulmonary hypertension, underwent a double lung transplant at Children's Hospital of Pittsburgh of UPMC. Less than a month later, she was well enough to take a dance class with the Pittsburgh Ballet Theatre. After another three or four weeks of rest at home in Harrisonburg, Va., she returned to her regular training regimen with Rockingham (Va.) Ballet Theatre. Her recovery from the transplant has continued apace. Read article

Memorial Run/Walk Slated for June 5

Wed, 12 May 2010 14:24:10 GMT

5/10/10 (The Orange County Register) Calif. - A memorial run/walk, held in honor of an Anaheim Hills girl, Taylor Caffrey, who died after battling pulmonary hypertension, is scheduled for Saturday, June 5. "Race 2 Cure PH: The Taylor Caffrey Memorial 5K Run/Walk," is being held in coordination with the Pulmonary Hypertension Association. Proceeds will go toward raising awareness about and finding a cure for the disease. Through it all (treatments, hospitalization and home health care), Taylor never complained or became uncooperative; rather she was a happy, outgoing child and brave little girl who fought hard every day against her disease. Read article | Learn more about the event in PHA's Events Calendar

Special Events Spring into Awareness-Raising Action

Tue, 11 May 2010 15:41:16 GMT

PHA extends a hearty thank you to our March and April special events organizers. These events heralded the arrival of spring with unique and determined efforts to raise both awareness and funds for PH! The events were planned by a community of dedicated volunteers, event organizers, and fundraisers who "rocked out," scrambled, partied New-Orleans style or donned their best pair of cowboy boots - all for a cure!

The Woodlands Crawfish Festival - The Woodlands, Texas
Rock Your Heart Out for PH - Atlanta, Ga.
2nd Annual Scramble for a Cure - Las Vegas, Nev.
4th Annual Spur a Cure for PH - Phoenix, Ariz.

Are you interested in springing into action by hosting a special event fundraiser in your community? Get connected with resources by contacting Jessica McKearin, PHA's Special Events Manager, at 301-565-3004 x765 or Events@PHAssociation.org. Learn more about organizing an event

Adoptive Couple Celebrates Their First Mother's Day

Tue, 11 May 2010 14:57:27 GMT

5/9/10 (The Holland Sentinel) Holland, Mich. - They were told to be prepared for the worst case scenario: The little boy from South Korea could go from the airplane to the intensive care unit and never leave. It would bring medical expenses, grief and stress on their marriage. Today, Emily Perton celebrates her first Mother’s Day with her son, Augustus Ju-Seong Perton. Augustus turned 2 in March. Gus has a hole in his heart and another heart defect that seems to have repaired itself. He has pulmonary hypertension, which was diagnosed as severe, but is now considered minor. Scar tissue has built up on his lungs from numerous bouts with pneumonia. Read article

New PHA Parents Monthly Telephone Support Group Meetings

Fri, 07 May 2010 21:33:35 GMT

First Meeting:
Thursday, May 27, 8:30 p.m. ET/5:30 p.m. PT

Instructions to call in:
Dial toll-free from the U.S. or Canada: 1-866-740-1260
When prompted, enter access code: 4850777

PH parents across the U.S. and Canada are invited to dial in to a toll-free telephone support group for caregivers of children with pulmonary hypertension. The first in a monthly series, this hour-long conference call will give PH parents the chance to connect in real-time for support, encouragement and information sharing.

View more information on PHA's family programs

Decipher the Code - Tools to Help You Understand Healthcare Reform and Medicare

Fri, 07 May 2010 21:26:58 GMT

If you are one of the nearly 45 million Americans on Medicare, you might have some questions about how healthcare reform is going to affect your Medicare coverage over the coming years. Medicare Rights Center recently created two timelines to help beneficiaries understand how reform will affect their coverage. The timelines cover changes to Medicare and the eventual phase-out of the Medicare Part D doughnut hole.

View the Health Reform and Medicare timeline | View the Closing the Doughnut Hole timeline

1st Annual Crawfish Festival A Huge Success

Fri, 07 May 2010 21:18:06 GMT

5/7/10 (Ultimate Spring) - The Woodlands Crawfish Festival was created as a community partnership between the Pulmonary Hypertension Association’s local fundraiser, Cure PH, and the South Montgomery County/Woodlands Chamber’s Young Professionals Network (YPN). Cure PH raises funds annually for research to help find a cure for pulmonary hypertension. Since its inception in 1999, its local fundraising events have raised more than $1.7 million for research. Read blog post | Read more info and view photos from this PHA special event

High-Altitude Research Advances Low-Altitude Medicine for Pulmonary Hypertension and Pulmonary Edema

Fri, 07 May 2010 20:06:54 GMT

5/4/10 (EurekAlert!) Philadelphia, Penn. - High altitude medicine is a "natural research laboratory" for the study of cardiovascular physiology and pathophysiology. Yves Allemann, MD, FESC, Swiss Cardiovascular Center, University Hospital, Bern, and Urs Scherrer, MD, Centre Hospitalier Universitaire Vaudois, Lausanne, have assembled an international group of leading authorities to contribute to a special issue of Progress in Cardiovascular Diseases dedicated to high-altitude medicine and novel insights into disease mechanisms provided by high-altitude research.

The article by Scherrer et al demonstrates how studies at high altitude have provided important insights into fundamental mechanisms underpinning pulmonary hypertension and pulmonary edema in humans. They show how these insights have been translated into novel approaches for the treatment of patients suffering from these problems at low altitude. Finally, it provides some hints on how the natural research laboratory of high altitude may provide novel insight into cardiovascular disease mechanisms in the future.

Read full press release

Pulmonary Hypertension Video Highlighted on National Journal Website

Thu, 06 May 2010 16:12:20 GMT

4/28/10 (NationalJournal.com) - A few weeks ago Donna Pederson, a 24 year old PH patient and nurse, PHA's good friend Congressman Kevin Brady, and PHA President Rino Aldrighetti agreed to a video interview with the National Journal. Their video publications are available to all Capitol Hill offices (and heavily trafficked by them), as well as to other subscribers.

Rino reported in his blog,

"I thought they did a pretty good job with the exception of reporting patient survivability at 2.8 years for 50% of patients. That number is true for patients not on medication. With 9 treatments available - 8 since 2001 - survivability continues to improve. At any rate, here's the video. See what you think."

Register for Webinar for Newly Diagnosed Patients

Tue, 04 May 2010 18:43:00 GMT

Newly Diagnosed? What You Need to Know
Thursday, May 20, 3:00 p.m. ET
Webinar - web login AND phone call

If you or someone you know was recently diagnosed with pulmonary hypertension, this free webinar is for you.

PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

Family of Daughter with PH Thank Medics and Guardian Angels Appeal

Tue, 04 May 2010 18:34:23 GMT

5/3/10 (The Press) United Kingdom - The parents of a baby who died only weeks after her first birthday have paid tribute to health workers who helped give them a precious year with their daughter. Gary Haq and Heidi Folland said the heart and lung condition pulmonary hypertension would have killed Sophia Haq within weeks of her birth – had she not received top-class treatment at York Hospital’s high-dependency unit. Read article

Pneumonia in Summit County Kids May Actually be ‘HAPE'

Tue, 04 May 2010 18:31:00 GMT

5/3/10 (Summit Daily News) Colo. - “Children who live in the mountains may develop high-altitude pulmonary edema (HAPE) even when they have not traveled,” according to pediatrician Christine Ebert-Santos. “This is not widely recognized, but it is important because HAPE is preventable and pneumonia is not.” The most common age is preschool through early high school ages. A child may have only one episode or several. They tend to outgrow this beyond then. However, complications such as pulmonary hypertension (high blood pressure in the lungs which exerts back pressure on the heart) may occur over time. A few of these children will be found to have a shunt or hole in the chambers of their heart, but most are normal. Read article

Is There a Viral Cause for Idiopathic Pulmonary Arterial Hypertension?

Tue, 04 May 2010 18:29:00 GMT

4/29/10 (Aetiology) - This article points to some of the inconclusive evidence that human herpesvirus-8 (HHV-8) may cause pulmonary arterial hypertension (PAH). Read article

5 Things to Know About Raynaud’s

Tue, 04 May 2010 14:36:34 GMT

4/29/10 (The New York Times) - Having a chronic condition like Raynaud’s requires vigilance. Here are five things that you should know about your condition from rheumatologists who treat it. Determining whether you have primary or secondary Raynaud’s is critical since the secondary form indicates a serious autoimmune disease like scleroderma or lupus. Catching a secondary disease before it progresses allows for early treatment of potentially life-threatening complications such as pulmonary hypertension in scleroderma or kidney problems in lupus. Read article

New Drug-Interaction Warnings for All HIV Protease Inhibitors

Tue, 04 May 2010 14:30:42 GMT

4/28/10 (AIDSMEDS) - Package inserts for all of the approved protease inhibitors (PIs) used to treat HIV have been updated to reflect important drug-drug interactions, according to an April 27 e-mail announcement from the U.S. Food and Drug Administration. Revatio is contraindicated among people living with HIV using PIs, meaning that the drug should not be used under any circumstances. Tracleer and Adcirca should be used cautiously. According to the FDA, their doses may need to be adjusted when combined with protease inhibitors. The agency also warns against using Tracleer with the PI Reyataz (atazanavir) if a Norvir (ritonavir) booster is not also included. Read article

PHA Has Moved!

Fri, 30 Apr 2010 16:45:00 GMT

PHA has moved up to the 10th floor of the same building, 801 Roeder Rd, Silver Spring, MD 20910. Please update your records. As we are settling in, PHA's phones and email are fully operational, as well as our toll-free patient-to-patient Helpline 1-800-748-7274.

Invitation for Physicians and Researchers to Event at ATS Meeting

Tue, 27 Apr 2010 15:19:20 GMT

Actelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee cordially invite medical professionals attending the upcoming American Thoracic Society (ATS) meeting in New Orleans to attend the following event:

2010 ENTELLIGENCE™ Young Investigators Award Ceremony
May 17, 2010
Palace Cafe, 605 Canal Street, New Orleans

Celebrate as the following 2010 research award winners are honored for their outstanding initiative - Eric Douglas Austin, MD, MSCI; Angela Ghatnekar, PhD; Jason Gien, MD; Michael J. Passineau, PhD; and Michael York, MD. Please confirm your attendance by emailing Diane Brenner at dbrenner@medtelligence.net by May 3, 2010. Please reserve early. Learn more (PDF)

Trial Shows Inhaled Drug Improves Pulmonary Arterial Hypertension Outcomes

Tue, 27 Apr 2010 15:07:52 GMT

(MedPage) - For patients with severe pulmonary arterial hypertension, adding inhaled treprostinil (Tyvaso) to other therapies improves exercise capacity and quality of life, a randomized, placebo-controlled trial showed. After 12 weeks of combination treatment with either bosentan (Tracleer) or sildenafil (Revatio), the prostacyclin analog resulted in a significantly improved peak six-minute walk distance compared with placebo (median 20 meters, P=0.0004), according to Vallerie McLaughlin, MD, of the University of Michigan in Ann Arbor, and colleagues. Dr. Mclaughlin is PHA's Scientific Leadership Council (SLC) Chair. Read article | Learn about PHA's SLC

Conference Pediatric Educational Programming and Fun in the Kids' Cabana

Mon, 26 Apr 2010 16:26:38 GMT

PHA's 9th International PH Conference offers kids and teens and their families lots of opportunities for learning and fun throughout the weekend.

Pediatric Education - Attend sessions, meet-up groups and support group meetings for parents, kids, teens and family members.
Family Buddies - Request to be paired with a "Buddy Family" so you and your child can start making friends before Conference even begins.
Kids' Cabana - Register your kid(s) for the Kids' Cabana when you register for Conference. The room is for all children and teens (3-16 years of age; no diapers please) who accompany their parents to Conference.
Teen Volunteers - Teenagers ages 15+ can volunteer in the Kids' Cabana on Saturday and Sunday. Email Emma@PHAssociation.org to learn more and sign up.
Supervised Field Trips - Kids ages 5-12 will visit The Discovery Science Center and teenagers 13-19 will visit Dave and Buster's.

Contact Carsten Hailey at KidsRoom@PHAssociation.org or by calling 301-565-3004 x764 to RSVP for field trips or register for the Kids' Cabana if you've already registered for Conference.

Haven't registered for Conference yet? Pre-registration closes June 9. Join us in California June 25-27. Register now

Merle Reesman Offers Help and Hope through the PHA Helpline

Fri, 23 Apr 2010 16:21:00 GMT

Volunteer Appreciation Week - PHA Volunteer Profile

Merle Reeseman is a super PH activist! She advocates for pulmonary hypertension research by lobbying her U.S. senators and representatives. She leads three pulmonary hypertension support groups (Mercer, Penn.; Cleveland, Ohio; and Pittsburgh, Penn.), and on top of that, she decided she could do more by signing up to be a Helpline volunteer. She is also a special event organizer, raises awareness through the media with PHA's PHAwareCampaign, and she is an online support group chat host.

Read Merle's profile | Read other PHA volunteer profiles

Thanks to all of PHA's volunteers! Happy Volunteer Appreciation Week!

Making Healthcare Coverage Accessible to All: Department of Health and Human Services Calls on States to Build High Risk Pools

Fri, 23 Apr 2010 16:10:41 GMT

With the passage of the Patient Protection and Affordable Care Act, the U.S. Department of Health and Human Services (HHS) has taken the first step in implementing healthcare reform: establishing a temporary high risk pool program to expand access to healthcare coverage. The establishment of the high risk pools is intended to provide affordable insurance to individuals who cannot otherwise find coverage.

Read the entire press release and other updates from HHS | View PHA's Statement of Principles on Healthcare Reform

Study Shows Bilirubin a Prognostic Marker in Patients with Pulmonary Arterial Hypertension

Fri, 23 Apr 2010 15:52:58 GMT

(7th Space) - Previous studies demonstrated relationship between the results of liver function test and the prognosis in patients with heart failure. However, few studies have examined this relationship in patients with pulmonary arterial hypertension (PAH), which this study did. Results indicated that elevated serum bilirubin is a risk factor for death in patients with PAH. Read study synopsis

New PH Treatment! New Form of Epoprostenol Now on the Market

Thu, 22 Apr 2010 16:56:00 GMT

(PR Newswire) - Actelion Pharmaceuticals US, Inc. today announced the commercial availability of Epoprostenol for Injection, an improved formulation of epoprostenol that is stable at room temperature, for the treatment of primary pulmonary hypertension and pulmonary hypertension associated with scleroderma spectrum of disease in NYHA Class III and Class IV patients. Simultaneously, the company has launched the PROSPECT registry, a multicenter, observational, U.S.-based registry that will provide additional clinical experience on patients being treated with Epoprostenol for Injection. Read press release

PH and... Brochures Introduced for Patients with Associated Diseases

Thu, 22 Apr 2010 16:29:59 GMT

PHA now offers a series of brochures that discuss the connection between pulmonary hypertension and the following: Hereditary Hemorrhagic Telangectasia (HHT), HIV, Liver Disease, Methamphetamine Use, Sickle Cell Disease and Scleroderma.

The PH and... brochures are available in two editions, one for patients and one for medical professionals. The patient materials, available online and under free materials in PHA's online store, educate patients with related illnesses and conditions about PH and the prevalence of PH in different disease states. The brochures for healthcare practitioners, available online, encourage medical professionals treating related illnesses to treat PH in partnership with a PH specialist.

View and download patient brochures | Order patient brochures in store | View medical professional brochures

For more information about PHA's programs for patients with associated diseases, contact Emma Bonanomi at Outreach@PHAssociation.org or 301-565-3004 x777.

New Medicare.gov Site Makes Understanding Medicare Easier

Thu, 22 Apr 2010 16:18:16 GMT

The Centers for Medicare and Medicaid Services unveiled its new Medicare website, Medicare.gov, earlier this week. The new site offers improved usability and better navigation. Watch Secretary Sebelius's introduction to the new site

Hello Kitty Dream Comes True for Girl with Pulmonary Hypertension

Thu, 22 Apr 2010 16:04:57 GMT

(Thurrock Gazette) United Kingdom - Brave little Paige Wilson, who suffers from pulmonary hypertension, was whisked off to Harrods in London to meet her idol Hello Kitty, courtesy of the charity Rays of Sunshine. The ten-year-old, of Highfield Gardens in Grays, is in and out of Great Ormond Street Hospital all the time, and it was there that her bravery came to the attention of the charity and it decided to make her dream come true. Read article

Local Volunteers Keep the Wheels Running

Thu, 22 Apr 2010 15:59:24 GMT

Our local volunteers, whether it's our weekly volunteer night workers or volunteers who come in during the work week, help PHA accomplish a lot of important tasks. Last night we held a local volunteer appreciation party, so no work for them this week. Check out some photos of their dedicated work

Crawfish, Zydeco and Alligator? Oh My!

Wed, 21 Apr 2010 15:09:49 GMT

The Woodlands Crawfish Festival, held on March 27 in The Woodlands, Texas, brought raising pulmonary hypertension awareness and funds for research to a whole new level! With nearly 2,000 people in attendance from the PH and general communities, this year's "bug boil" was the largest in its three-year history. Hosted by PHA Board of Trustees member Jack Stibbs and his family, this exciting New-Orleans themed event was so popular that it sold out!

PHA Volunteer John Hess Helped with PHA's New Website

Wed, 21 Apr 2010 15:00:36 GMT

This week, for Volunteer Appreciation Week, PHA is thanking our volunteers and profiling some of the work they do. Today's spotlight is on John Hess, who besides serving on PHA's Board of Trustees and our Parent Advisory Board, was crucial to our website redesign planning process by offering expert advice beyond our internal capacity. He continues to serve as a website volunteer advisor as we continually strive to improve this site. John got involved with PHA after his son Iain (pictured right with John) was diagnosed with pulmonary hypertension in October of 2004 at the age of 5.

Read John's profile | Read other PHA volunteer profiles

We're Moving Up in the World - To the Tenth Floor That Is

Wed, 21 Apr 2010 14:49:36 GMT

PHA offices are moving up to the tenth floor of the same building, 801 Roeder Road, Silver Spring, MD 20910. Starting May 1 we will be in Suite 1000. Also, during the afternoon of Friday, April 30, PHA offices will be without phones and email.

Young Alfie Oliver to Undergo Life-Saving Procedure

Wed, 21 Apr 2010 14:44:19 GMT

(York Press) United Kingdom - The parents of a seriously ill York boy face an agonizing few weeks as they wait to see if he will respond to life-saving treatment. Young Alfie Oliver, who suffers from a rare lung condition called pulmonary hypertension and a weakened heart, will undergo a procedure to fit him with a device through which an essential drug, epoprostenol, will be delivered for the rest of his life. Read article

Your Gift Can Be a Lifeline

Tue, 20 Apr 2010 15:54:53 GMT

"Of all the assistance that has been offered, the support groups and PHA have made the most difference in my life." -Lindsay Collins, PH Patient

PHA works day in and day out to make a difference in the lives of patients like Lindsay. We have become the lifeline for so many by providing education, networking opportunities and above all, hope for a cure for all who are touched by pulmonary hypertension.

But we cannot do it alone. By donating to PHA's spring fundraising appeal you help us get one step closer to the day when no one suffers from pulmonary hypertension.

PHA Profiles Volunteers for Volunteer Appreciation Week

Tue, 20 Apr 2010 15:48:44 GMT

Thank you volunteers!

It's Volunteer Appreciation Week, and PHA would like to thank all of our volunteers for your tireless work. It is because of the work you do that we can accomplish so much. We have highlighted the stories of some of our volunteers for this week, such as Katie Tobias, Pathlight columnist (pictured right).

Read profiles

Health Wise Segment Features Pulmonary Arterial Hypertension

Tue, 20 Apr 2010 15:43:57 GMT

North Carolina support group leader Doug Taylor reported to us that WTVI in Charlotte, N.C., had a recent program on pulmonary arterial hypertension (PAH). Host Joey Popp interviewed cardiologist Theodore Frank, MD, and pulmonologist Doug Kelling, MD, as well as local PH patients (and twins) Linda Miles and Brenda McCallum. Watch hour-long video segment

PHA Conference Scholarship Fund Reaches Over $219,000

Tue, 20 Apr 2010 15:36:06 GMT

PHA's President Rino Aldrighetti reported the following in his blog on Friday:

Patty, our Finance Director reported that our Scholarship Fund has grown to $219,305. To understand what this means, you have to think about the number of PH patients in the U.S. in proportion to diabetes (23.6 million), asthma (16.4 million), Bi-polar disorder (5.7 million), Alzheimers (5.3 million) or many others. Compare these numbers to the 20,000 to 30,000 diagnosed PH patients in the U.S. Our numbers are small and so our climb to make the changes we need and want on any issue is steep. It is a climb that involves everyone's best efforts...and, in that, this community has never disappointed.

That our community is able to provide this kind of support for patient scholarships - to what has been described by many who attend as a life-changing event - says a lot about the PH community's values.

We're proud of the scholarship program. There's no question it's hard work to raise these funds but it's so worthwhile. My only regret is that, even at this extraordinary level of support, there are still many patients who have to be declined for scholarships. My dream is that, someday, we will be able to endow this program at a level high enough to guarantee that we can fully meet the need and turn away no patient who wants to come.

Thanks to everyone who has contributed to PHA's Conference Scholarship Fund.

Interested in donating? Contribute Now | Or purchase a Conference Program Book Note of Thanks and Remembrance, the proceeds of which go to our scholarship fund

Research Shows Possible Predictors of Pulmonary Hypertension in Idiopathic Pulmonary Fibrosis

Tue, 20 Apr 2010 15:12:33 GMT

4/15/10 (7th Space) - In this study, iron deposition and alveolar septal capillary density (ASCD) in non fibrotic lung tissue showed an association with right ventricular systolic pressure (RVSP), suggesting that these features are possible morphologic predictors of pulmonary hypertension in idiopathic pulmonary fibrosis (IPF). Read article

Thank Someone Special and Gladden Another's Heart

Fri, 16 Apr 2010 21:26:28 GMT

Conference Program Book Notes of Thanks and Remembrance - Due May 1

A proud tradition of PHA's International PH Conferences is the inclusion of Notes of Thanks and Remembrance in the onsite Conference program book. For only $25 your note will show that special person in your life — whether in memory of a loved one, a caring friend or family member, a trusted nurse or specialist, your support group leader or your life partner — how much their support means to you. Attendance at Conference is not required to submit a note.

At the same time, you'll be helping a deserving patient to attend Conference as your $25 donation will support PHA's Conference Scholarship Fund. PHA has received a record number of scholarship requests to attend this year’s Conference in California this June, and we want to make this opportunity available to as many as we can.

Submit your Note of Thanks and Remembrance

Demystify "PH-Speak" with our New Acronym Decoder

Fri, 16 Apr 2010 21:17:23 GMT

Acronyms and shorthand are common among members of the pulmonary hypertension community, but no one is born knowing the difference between your PAP and your PCP! Newcomers and old-timers alike can use this alphabetical list of PH-related abbreviations, adapted from a resource created by PHA Australia, to brush up on the “PH-speak” you run across in our online communities, at support group meetings and at the doctor’s office.

View PH Acronym Decoder

Viagra Eases Lung Condition

Fri, 16 Apr 2010 15:46:52 GMT

4/15/10 (Spenborough Guardian) United Kingdom - A Cleckheaton man with a rare lung disease can now run around with his kids again - after being treated with Viagra. Paul Coates, 30, played rugby league for Wyke for several seasons but started suffering a shortness of breath and blackouts during training. He found his breathing problems gradually worsened to the point where climbing the stairs became a mammoth task.

Doctors initially thought his problems were linked to a virus and referred him to Dewsbury and District Hospital, where he underwent a series of tests. He was eventually referred to a specialist hospital in Sheffield where he was diagnosed with Idiopathic Pulmonary Hypertension, an incurable lung condition that only affects about 4,000 people in the UK. The disease is treatable, but incurable. Paul was prescribed the sexual stimulant Viagra to combat the illness and hasn't looked back since. Read article

Homecoming: Banners and Cheers Greet Boy Who Underwent Transplant

Fri, 16 Apr 2010 15:35:52 GMT

4/15/10 (Telegraph-Journal) Canada - Less than seven months after undergoing a double-lung transplant, 11-year-old Braden Gendron ran down the road to his former school with his Grade 6 classmates just moments after arriving back in Hampton on Wednesday. It was something he had never done before with his friends. Braden received new lungs in September after suffering for six years from pulmonary hypertension - a disease that narrows the arteries and capillaries in the lungs, causing the heart to work harder. The only cure for the rare disease is a double-lung transplant. Read article

En Español: Consensus Statement on Diagnosing and Treating PH

Wed, 14 Apr 2010 20:02:07 GMT

A team of physicians in Latin America has developed a comprehensive consensus guide to diagnosis and treating pulmonary hypertension. Please share this resource with Spanish-speaking medical professionals you may know. el diagnostico y tratamiento de HAP (PDF)

Valve-in-Valve Implants via Catheter Effective in High-Risk Patients

Wed, 14 Apr 2010 19:51:37 GMT

4/12/10 (Physorg.com) - Replacing failing artificial animal-based heart valves by implanting mechanical valves inside them is an effective option for high-risk patients, according to research reported in Circulation: Journal of the American Heart Association. The procedure is offered only to selected patients with failed surgical valves who would be poor candidates for another operation. Factors that made the patients in the study risky or ineligible as surgical candidates included two or more prior open-chest surgeries, severe pulmonary hypertension and various heart or other complications. Read article

UNC Doctor Uses Award for Pulmonary Hypertension Research

Wed, 14 Apr 2010 19:44:55 GMT

4/9/10 (Medical News Today) - Sean E. McLean, MD, has been selected as a 2010-2014 Harold Amos Medical Faculty Development Program scholar. McLean, an assistant professor of pediatric surgery in the University of North Carolina at Chapel Hill School of Medicine, is one of only 11 nationwide selected this year to receive the award. McLean said he plans to use the $420,000, four-year grant to support a laboratory research project that focuses on how changes in smooth muscle cell phenotypes contribute to pulmonary hypertension, using a mouse model for congenital diaphragmatic hernia. Read article

Two Women Shine Light on Disease and PH Support

Wed, 14 Apr 2010 19:35:53 GMT

PHA Support Group Leader Katrina Koerner and her PHriend Brenda Reynolds are featured in their local paper. The article talks about how they met and found support in each other, their friends and family, the local PHA support group and PHA itself. Read article | Connect with Katrina through the Montana Support Group

PH Research Benefits from Federal Stimulus Funding

Wed, 14 Apr 2010 19:26:18 GMT

The Pulmonary Hypertension Association's Washington Rep, Gavin Lindberg, sent us a report recently from the National Institutes of Health (NIH) on the investment made in pulmonary hypertension research with funds from the economic stimulus bill. PHA joined with the biomedical research community last year in encouraging Congress to provide an additional $10 billon to the NIH as part of the American Recovery and Investment Act (ARRA).

The NIH has been producing "ARRA Investment Reports" on diseases that benefited significantly from stimulus funding. Only a handful of rare diseases have been the subject of these investment reports and PH is one of them. Read more on PHA President Rino Aldrighetti's blog

Travel and PH Webinar Recording Available

Wed, 14 Apr 2010 19:11:43 GMT

The video recording from our April 1 webinar, Planes, Trains, Cars and more: Travel to PHA's 9th International Conference, is now available for viewing online. Watch travel and PH webinar

We're Moving!

Wed, 14 Apr 2010 19:07:11 GMT

The Pulmonary Hypertension Association office is moving, but only up a few floors. We'll still be at 801 Roeder Road in Silver Spring, MD 20910, but we'll be in Suite 1000 starting May 1. Change your address books!

Getting Involved at Conference Adds to the Fun - Here's How

Thu, 08 Apr 2010 21:02:17 GMT

Make attending PHA's 9th International PH Conference and Scientific Sessions even more fun by becoming a part of the activities and events. Here are some ways you can get involved at our Conference this June.

Volunteer to Help Out
At Conference, you can help prepare registration bags, serve as a room host or help out behind the scenes as your health and inanterests allow. To volunteer during Conference, just check the volunteer box on your Conference registration form or contact Volunteer@PHAssociation.org if you've already registered.

Buddy Up with a New PHriend
Pair up with another PHer at Conference to share the experience together. We're looking for new Conference attendees and those who have attended in the past who can show newbies the ropes. Sign up to become a Conference Buddy

Walk the Runway in the Fashion Show
Have a unique way of hiding, or flaunting, your pump or oxygen tank? We want you to show it off in our popular PH Fashion Show at the Saturday evening Founders' Dinner. All ages (especially children) are welcome to participate. Contact Jillian at Jillian@PHAssociation.org to walk the runway.

New Resource - FAQs for Newly Diagnosed Patients

Thu, 08 Apr 2010 20:54:54 GMT

The first step to understanding your diagnosis with pulmonary hypertension is to find answers to your most urgent questions. Our FAQs for Newly Diagnosed Patients will help you build a foundation of information to make sense of your early research and doctors’ appointments. Get answers

Exercise and PH Webinar Today at 2 p.m. ET

Thu, 08 Apr 2010 15:35:14 GMT

This is a reminder that PHA PH Resource Network member Barbara Smithson, RN, MSN, will be giving a webinar presentation with a Q&A session to follow today at 2:00 p.m. ET. Learn how exercise affects the body and the specific limitations that go hand in hand with having pulmonary hypertension. Barbara will discuss the risks and benefits associated with exercise by highlighting a research study that measured the effects of exercise in PH patients. Register now

Social Security Administration Briefed by PH Doctor Today

Wed, 07 Apr 2010 21:39:00 GMT

As part of PHA's ongoing work with the Social Security Administration (SSA) to improve pulmonary hypertension patients' access to disability benefits, Dr. Ronald Oudiz (pictured right) represented PHA's Scientific Leadership Council with a presentation to the Institute of Medicine (IOM) committee charged with updating the Social Security Cardiovascular System Listings today. He presented on how to best include PH in the SSA's Listing of Impairments used to determine if a patient is eligible for Social Security disability.

Visit the IOM’s website to view Dr. Oudiz’s presentation and PHA’s formal statement on disability in the meeting's presentations. Also, visit PHA's Online Insurance Guide.

Member-Only Store Special - We Say 'Thank You' So You Can Say 'Thank You'

Wed, 07 Apr 2010 21:21:00 GMT

Every quarter, PHA thanks its members by offering one of our popular store items at a discount. This quarter we are pleased to offer our new thank you cards as our show of gratitude. Designed by PH patient Kathy Levitt, these beautiful cards are available in packages of 10 featuring two designs for $12. Through July 1, PHA members can purchase the cards for $9, a 25% discount.

Buy now

Not a member? Join PHA

Healthcare Reform and PH

Wed, 07 Apr 2010 21:15:05 GMT

The recently passed healthcare reform bill has many elements of interest to pulmonary hypertension patients, caregivers, medical professionals and industry representatives. PHA's Washington Representative, Gavin Lindberg, has provided a helpful summary of points of interest to the PH community including a timeline for implementation. Many of the insurance reforms in the legislation, such as limits on waiting periods and coverage caps, are supported by PHA and prioritized in our Statement of Principles on Healthcare Reform. We will continue to work with the PH community to improve access to PH therapy and other healthcare necessities. Read the summary of healthcare reform provisions for PHers (PDF) | Read PHA's Statement of Principles on Healthcare Reform

Path to a Cure Climbers Appear on Times Square Sign

Tue, 06 Apr 2010 16:35:34 GMT

On March 19, PHA's Mt. Kilimanjaro Path to a Cure climbers appeared on the New York City Times Square sign with the caption, "Climbers summit Mt. Kilimanjaro to support pulmonary hypertension research." Approximately 1.6 million people walk past the Times Square sign each day. This is yet another way our climbers' story has raised awareness about PH in the general public. Read news coverage of the climb | Learn more

Learn About the Risks and Benefits of Exercising with PH This Thursday

Mon, 05 Apr 2010 22:10:57 GMT

Join PH Resource Network's Barbara Smithson, RN, MSN, this Thursday, April 8 at 2 p.m. ET for a presentation on how exercise affects the body and the specific limitations that go hand in hand with having PH. Barbara will discuss the risks and benefits associated with exercise by highlighting a research study that measured the effects of exercise in PH patients. Barbara will take participants' questions following her presentation. PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc. Register now for the webinar (Internet login AND phone call)

'Love' Drug May Save Lives, Help People Breathe Easier

Mon, 05 Apr 2010 20:46:20 GMT

4/1/10 (ThePittsburghChannel.com) - Christina Wolford has lived with pulmonary hypertension for the last 15 years. The disease makes it difficult to breathe, makes her feel tired and, when she's not on medication, she can pass out. Two months ago, Wolford started taking a drug called Adcirca, which is the same thing as Cialis, although the doses are taken a bit differently. Read article

Conference Early-Bird Discount Extended for One Week

Wed, 31 Mar 2010 15:52:00 GMT

Nearly 400 PHA members have already registered to attend PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions: Riding the Wave to a Cure. Join the other PH patients, family members and medical professionals who have already taken advantage of the early-bird discount to attend the largest PH gathering in the world. The early-bird discount is now extended through April 7. Don't miss out! Early-bird discount pricing will not be extended past April 7 so register now!

Q&A Session on Healthcare Reform with HHS Secretary Sebelius Today

Wed, 31 Mar 2010 15:10:37 GMT

Today, March 31, U.S. Health and Human Services (HHS) Secretary Sebelius will be hosting a live question and answer session at 7:00 p.m. on the issue of healthcare reform. The Q&A session will be online on the government health reform website. You can submit questions ahead of time by emailing healthreform@hhs.gov.

Join Us in Welcoming New Chat Host, Stu Berwick

Wed, 31 Mar 2010 15:04:22 GMT

It is our pleasure to introduce our new online support group chat host, Stuart (Stu) Berwick. Stu has been active on Facebook, helping to build a strong presence there for pulmonary hypertension awareness and community, and giving his "Periwinkle Awards" of recognition to others.

Stu is a nine year PH patient living in Texas; he is also a Stage 4 Cancer survivor, originally from England and now a naturalized citizen. He enjoys volunteer work at his church, filming Children's Ministry programming, soccer, LeMans and photography.

To welcome Stu and participate in the conversation, join Stu's online support group chat every Thursday at 8:00 p.m. ET when he co-hosts with Mack McCarthy.

Orena Alsip Introduces Global PuckerUp4PH Campaign in the U.S.

Tue, 30 Mar 2010 22:03:00 GMT

Orena Alsip introduced the 2010 PuckerUp4PH Campaign in the U.S. this week in memory of her daughter, Amber Newby (pictured right), who passed away in January. Amber had a passion for saving other children with pulmonary hypertension from being diagnosed too late. She and Orena worked together on a PH Awareness Week each year and Orena is determined to continue Amber’s legacy. She chose this week because Amber’s birthday is April 3.

PuckerUp4PH is a global attempt to set a Guinness World Record for the largest amount of blue lip prints. PuckerUp4PH originated in the United Kingdom and is coordinated by PHA-UK. It officially launches in May in 29 countries, but upon hearing Amber’s story, the folks at PHA-UK decided they had to do what they could to celebrate her life.

Learn more about PuckerUp4PH | Read PHA’s press release

Child Recovering After Surgery to Treat Condition

Tue, 30 Mar 2010 21:19:58 GMT

3/27/10 (The Canon City Daily Record) Colo. - Brooklyn Clasby, 3, underwent surgery at Denver Children’s Hospital to have a broviac tube inserted into her heart that will supply medication directly to her heart 24 hours a day for 5 to 10 years conservatively. Earlier this year, little Brooklyn told her mom, Jennica Clasby, that her “heart hurt,” and after tests and exploratory surgery, Brooklyn was diagnosed with idiopathic (primary) pulmonary hypertension, in one of its most severe forms. Read article

Marcelas Owens' Big Day: Seattle Boy Who Lost His Mother to PH Spent His Day with Pres. Obama

Wed, 24 Mar 2010 21:35:28 GMT

As we reported, Marcelas Owens' foray into the healthcare debate has raised a lot of awareness about pulmonary hypertension through the media attention of his advocacy efforts and why he was pushing for healthcare reform. He became an advocate in memory of his mother, who had died of PH. Yesterday, Marcelas stood next to President Obama as the healthcare bill was signed into law. Regardless of how you stand on healthcare reform, it is a momentous occasion to have a PHer bring awareness of pulmonary hypertension to such a large audience. Go Marcelas! Read article

Path to a Cure Brings PH Awareness to More Than 1 Million

Mon, 22 Mar 2010 18:44:14 GMT

As we reported previously, Dr. Raymond Benza, Dr. Robert Frantz and Jessica Lazar, PA, successfully reached the summit of Mt. Kilimanjaro, the highest peak in Africa, on February 26. We are happy to report that at the latest tally their story garnered 62 media hits reaching more than 1.2 million people! Twenty of those media hist were generated by our young adult PHers of Generation Hope and our Unity Walk organizers.

Read news coverage | Find resources for inviting media to your event

11-Year-Old Who Lost Mother to Pulmonary Hypertension Speaks Out in Healthcare Debate, Garners News Coverage of PH

Mon, 22 Mar 2010 15:31:33 GMT

Marcelas Owens from Seattle has become an advocate for healthcare reform in memory of his mother, who died of pulmonary hypertension. He has garnered a lot of press coverage on both sides of the debate, including awareness about what pulmonary hypertension is. Read articles

From Wall Street to Control Tower, PH Parent Talks About Stress of Job and Home

Mon, 22 Mar 2010 15:11:00 GMT

3/19/10 (New York Times) - Stephen Abraham: "Some people toss and turn at night from job stress, too, but that’s not what disturbs my sleep. My 10-year-old daughter’s health sometimes keeps me awake. She has pulmonary hypertension, a disorder of the blood vessels in which the heart has to pump harder for blood to reach the lungs. You can’t imagine the stress of seeing your child on a heart and lung bypass machine, which happened once, or in an intensive care unit. Now that makes me anxious." Read article

New 'Save The Cherubs' Campaign Brings Awareness To Congenital Diaphragmatic Hernia

Mon, 22 Mar 2010 15:06:31 GMT

3/18/10 (MyNC.com) - After struggling since 1995 to bring more awareness to Congenital Diaphragmatic Hernia, a birth defect that affects 1600 babies each year in the U.S., CHERUBS announces a national CDH Awareness Campaign. CDH affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year and over 600,000 babies since the year 2000—half of which do not survive. Some of the surviving babies, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, pulmonary hypertension or other long-term pulmonary problems. Read article

Reynaud's Phenomenon Explained

Mon, 22 Mar 2010 14:58:44 GMT

3/18/10 (Pasadena Star-News) - Raynaud's phenomenon is a disorder of the small blood vessels within the body that supply the skin with oxygenated blood. When the condition is present, the arteries involved contract briefly. This, in turn, limits blood flow. When the skin is deprived of blood, it turns white, then blue, and skin temperature is affected. As a general rule, there is no pain, but numbing or prickly sensations can occur. Triggers are stress, some migraine medications, scleroderma, systemic lupus, pulmonary hypertension, rheumatoid arthritis, injury and more. Read article

Down Syndrome Children At Risk of Developing Pulmonary Hypertension

Mon, 22 Mar 2010 14:51:18 GMT

3/17/10 (Bernama.com) Kuala Lumpur - This article about Down Syndrome children includes information that almost half of all children born with Down Syndrome have a congenital heart defect. They are also at an increased risk of developing pulmonary hypertension. Read article

Minimally Invasive Heart Valve Therapy Improves Heart Function, Quality of Life for Mitral Regurgitation Patients

Mon, 22 Mar 2010 14:46:26 GMT

3/14/10 (PRNewswire) Evanston, Ill. - NorthShore University HealthSystem interventional cardiologist, Ted Feldman, MD, presented data at the American College of Cardiology annual scientific sessions from the EVEREST II trial (Endovascular Valve Edge-to-Edge REpair STudy) demonstrating the MitraClip, a novel, first-in-class catheter-based device, is a safe and effective alternative to open heart surgery for select patients with mitral regurgitation. Patients in the study had at least moderate-to-severe functional or degenerative mitral regurgitation and were either symptomatic or asymptomatic with evidence of compromised left ventricular function, atrial fibrillation, or pulmonary hypertension. Read article

Prince County Hospital in Canada Improves Access to Echocardiogram Service

Mon, 22 Mar 2010 14:40:33 GMT

3/12/10 (The Journal Pioneer) Summerside, Canada - Prince County Hospital has expanded its echocardiogram services. The addition of the new echocardiogram, which uses ultrasound to take two-dimensional images of the heart, allows the hospital to perform nearly twice as many tests a week than before. atients are most commonly referred for an echocardiogram if they are displaying symptoms for, or have been diagnosed with, heart murmurs, coronary heart disease, congestive heart failure, pulmonary hypertension and/or patients with auto-immune disease, to name a few. Read article

Critical Care in Obstetrics - Amniotic Fluid Embolism

Mon, 22 Mar 2010 14:31:15 GMT

3/11/10 (Express Healthcare) - Amniotic Fluid Embolism (AFE) is a catastrophic peripartum syndrome that manifests as a sudden onset of severe dyspnea, hypoxemia, haemodynamic collapse, coagulopathy and seizures. The amniotic fluid and foetal product may initiate an anaphylactoid reaction, resulting in endogenous mediator release and causing hypotension, tachycardia, hypoxemia and seizures, pulmonary arterial vasospasm and transient pulmonary hypertension, left ventricular failure, decreased cardiac output, and hydrostatic pulmonary edema. Read article

Woman Breathes Easy After Getting State's First Lung Transplant Since Katrina

Tue, 09 Mar 2010 18:40:05 GMT

(NOLA.com) New Orleans, Louisiana - Cheryl Guillory, 39-year-old nurse and mother of three young children, is no longer struggling for oxygen or hope after a Feb. 4 surgery at Ochsner Medical Center made her the first lung transplant recipient in Louisiana since Hurricane Katrina. "It's been an eye-opener. You're not invincible," Guillory said, recalling the three years since doctors diagnosed her primary pulmonary hypertension. Read article

FDA Clears GeNO LLC Investigational New Drug Application for Nitric Oxide Delivery System

Tue, 09 Mar 2010 18:19:45 GMT

(PRNewswire) COCOA, Fla. - GeNO LLC (www.genollc.com) a privately held, advanced development-stage technology company, today announced that the U.S. Food and Drug Administration (FDA) has granted clearance of its Investigational New Drug (IND) application for its stand-alone gas cylinder Nitrosyl™ Delivery Platform (NDP). The initial indication to be studied for nitric oxide delivered via the GeNO Nitrosyl delivery system is as a diagnostic agent for administration as an adjunct to right heart catheterization in patients with Pulmonary Arterial Hypertension (WHO Group 1) to add information to improve clinical decision making. Read article

Boy Who Lost Mom to PH Takes Health-Care Story to D.C.

Tue, 09 Mar 2010 18:03:00 GMT

(Seattle Times) Seattle, Washington - Marcelas Owens may be the only health-care lobbyist around here who needs an excused absence from school. The fifth-grader has been campaigning for changes in the health-care system since his mother died after she fell ill and lost her job and insurance coverage. He was 7 at the time. Diagnosed with PH, his mother died at age 27. Read article

Kids at Columbus Elementary School Inspired by Classmate with Pulmonary Hypertension

Mon, 08 Mar 2010 17:02:00 GMT

3/4/2010 (The Starkville Dispatch) - Kindergartner Tabby Karr is Cook Elementary Fine Arts Magnet School’s jump rope queen, even if she can’t skip along with her classmates during a physical education unit on heart health. Karr was diagnosed with pulmonary hypertension in September 200. Come March 26, Tabby will be honored as queen of Cook’s Jump Rope For Heart Heroes Ball. Read article

PH Patient Profile: Self-Driven Statistician Embraces Clover Basketball

Mon, 01 Mar 2010 22:49:37 GMT

3/1/10 (Enquirer Herald) Clover, S.C. - Clover High School senior Bryson Bottini, who has endured pulmonary hypertension since birth, has prided himself in assuming the role of do-it-all statistician for the Blue Eagle basketball team since the eighth-grade. Truth is, Bottini, the son of Rich and Beth Bottini, embraces life itself, seizing opportunities that come his way with maximum effort and commitment. "Bryson has never allowed his disease to dictate who he is," Rich Bottini said. "He takes what he’s been blessed with in life and grows with it." Read article

PHA "Path to a Cure" Climbers Garner More News Coverage with Their Victorious Climb to Mt. Kilimanjaro Summit

Mon, 01 Mar 2010 17:21:19 GMT

PHA's Path to a Cure climbers, Dr. Raymond Benza, Dr. Robert Frantz and Jessica Lazar, PA, have garnered more news coverage with their victorious climb to the summit of Mt. Kilimanjaro, Africa's tallest peak. Dr. Frantz said the following via a satellite phone interview with The Post-Bulletin of Rochester, Minn., of reaching the peak, "I actually had tears in my eyes because I was a little anxious of the whole thing in terms of whether we'd be safe and whether we'd get sick, and it was very, very hard and we were carrying the good wishes of a lot of our patients with us, and so it was really very emotional and a relief and a real joy to have accomplished."

Allegheny General Doctor Scales Kilimanjaro Raising Funds to Fight Lung Illness (2/27/10, Pittsburgh Tribune-Review)
Brighter Side -- The Brighter Side of the Daily News -- Kilimanjaro Summit (2/27/10, The Post-Bulletin, Rochester, Minn.)
Mayo Clinic Doctor Reaches Top of Mt. Kilimanjaro (2/26/10, The Post-Bulletin, Rochester, Minn.)
Mayo Doctor Climbing Kilimanjaro (2/26/10, KAAL TV ABC 6 News, Minn.)
Mayo Doctor Describes Life at 15,000 Feet on Kilimanjaro (2/25/10, The Post-Bulletin, Rochester, Minn.)
Mayo Clinic's Dr. Robert Frantz at 15,000 Feet (2/24/10, The Post-Bulletin, Rochester, Minn.)

Listen to live from the Mountain updates | Learn more | Make a gift

A Wake-up Call for Those with Sleep Apnea

Mon, 01 Mar 2010 16:47:17 GMT

3/1/10 (silive.com) Staten Island, N.Y. - Sleep apnea is a condition that results in oxygen desaturations (a drop in blood oxygen level) throughout the night due to breathing cessation by a central or an obstructive cause. There are two varieties of sleep apnea: central sleep apnea and obstructive sleep apnea (OSA). In addition to daytime tiredness, it has significant cardiovascular effects as well. Fifty percent of patients with OSA have hypertension (high blood pressure). A significant amount of patients develop pulmonary hypertension which can lead to heart failure. Sleep apnea has also been implicated in impotence, decreased libido and increased risk of traffic accidents. Read article

Path to a Cure Climber Dr. Raymond Benza Appointed to Federal Committee on Organ Transplantation

Mon, 01 Mar 2010 16:42:21 GMT

Not only did Dr. Raymond Benza just climb the highest peak in Africa in support of pulmonary hypertension, The Pittsburgh Tribune-Review reported yesterday that he was appointed to the U.S. Department of Health and Human Services Advisory Committee on Organ Transplantation. He is director of the heart failure, transplant, mechanical, circulatory support and pulmonary hypertension program at Allegheny General Hospital's Gerald McGinnis Cardiovascular Institute and is a member of PHA's Scientific Leadership Council (SLC). Read more about the Path to a Cure Mt. Kilimanjaro climb | Learn more about PHA's SLC

Teen in Lee County, Ga., Needs Second Double Lung Transplant

Mon, 01 Mar 2010 16:28:19 GMT

2/26/10 (WALB News 10) Albany, Ga. - A 19-year-old in Lee County is waiting on a double lung transplant. It's a road she's been down before. When she was only ten, Victoria Doolittle was diagnosed with pulmonary hypertension. She received new lungs and that disease went away, but just a few months ago, her body began rejecting those lungs and she's struggling to breathe. Read article

"Path to a Cure" Climbers Reach Mt. Kilimanjaro Summit Breathless But Invigorated

Fri, 26 Feb 2010 23:00:00 GMT

PHA's Path to a Cure climbers reached the 19,330 feet summit of Mt. Kilimanjaro at 6:45 a.m. today! "We did it!" Dr. Raymond Benza exclaimed when the climbers called in via satellite phone to this morning's PHA staff meeting.

We knew from their posting yesterday that they were to begin their final ascent from about 15,300 feet at midnight and make the 4,000 foot final push to 19,330 feet about 6 hours later. Dr. Robert Frantz said they climbed by moonlight and arrived at the summit, "the rim of the crater," just as the sun was coming up. Dr. Benza said, "It was astounding at the top of the mountain. We could see half of Africa. It was unbelievable." We should have a lot of great photos to share once they return from their climb.

After an hour at the peak they began their descent at a quick pace, descending 6,000 feet in four hours. Dr. Benza said it was like skiing through gravel. They expect to be exiting the park sometime tomorrow.

As we reported earlier, the climb was difficult. "We knew it would be hard but we didn't imagine it would be this hard," Dr. Benza said. Exposed to high altitude for seven days, they were even breathless getting dressed. "It was exactly like our patients. It humbled us quite a bit." On the final push to the summit Jessica Lazar, PA, said, "I got separated from the group because I was having exertional syncope which is a little dangerous. I would keep track of which side the cliff I was on and when I felt it coming on, I would fall in the other direction."

To date the Path to a Cure campaign has raised over $109,000 for PH research and patient services and garnered a lot of much-needed awareness for pulmonary hypertension in the media. They have also given our community a dose of inspiration. Thank you Path to a Cure climbers! We encourage you to spread this inspirational story through your online social networks on Facebook, Twitter and elsewhere. Read more on our President's blog | Listen to the live interview from the mountain | Read news coverage of the climb | Leave a note of encouragement on the climbers' blog | Support their climb with a gift

Well-Deserved Recognition Goes to Committed Dad

Fri, 26 Feb 2010 20:01:52 GMT

PHA was delighted - but not surprised - that his home community recognized Jack Stibbs with an Interfaith of The Woodlands (Texas) 2010 Service of Excellence Award. Jack was honored in the Youth category, primarily for raising more than $1.5 million over 10 years to support PHA's research program through a series of special events.

According to Jack's daughter Emily, a PH patient, "My father has sacrificed so much ... and is truly a man of compassion and perseverance." In supporting Jack's nomination, PHA President Rino Aldrighetti noted that "Jack has committed his leadership as a volunteer, Board member and later as Board chair to increase opportunities for patients through research."

Way to go, Jack! Read more about Jack

Non-Patient Conference Award Provides Scholarship to a PHA Volunteer

Fri, 26 Feb 2010 19:57:14 GMT

PHA founding members Pat and Jerry Paton (pictured on left with Steve Van Wormer) invite all non-patient PHA volunteers to apply for the Julie Hendry Memorial Scholarship Award, named for their daughter, Julie Paton Hendry. "Our daughter volunteered since the day PHA started," said Pat Paton. "Volunteers are important too, and we want to acknowledge those who follow in her footsteps by offering them an opportunity to attend Conference. Anyone can apply if they are an eligible PHA volunteer - support group leaders, fundraisers, Pathlight contributors, anyone who has given their time to our cause."

This award offers a non-patient, active PHA volunteer up to $1,000 to help cover the cost of Conference registration and transportation. The deadline for applications is April 1, 2010. Apply for the Julie Hendry Memorial Scholarship Award

"Path to a Cure" Climbers at 13,000 Feet - Experiencing PH-like Symptoms

Thu, 25 Feb 2010 21:41:00 GMT

PHA's Mt. Kilimanjaro Path to a Cure climbers have been calling in every day with reports about their climb. Yesterday they called in from Karanga Camp at 13,100 feet. They have been experiencing symptoms that their pulmonary hypertension patients live with - their oxygen saturation levels have been hovering around 82 percent. Jessica Lazar, PA, got quite sick but is feeling better now. Dr. Robert Frantz reports that he has been getting nose bleeds, which his patients sometimes get because of the medicines they take. Dr. Raymond Benza says that the past day was pretty rough, but they woke to a beautiful sunset. Read Live from the Mountain updates

Dr. Robert Frantz (pictured right) called in to the Rochester, Minn., Post-Bullettin as well yesterday. He says, "We're getting short of breath literally getting dressed, which is really amazing. I'll sort of scramble around in the tent to get my stuff on and have to rest for a few minutes because my heart rate's gone up and I'm out of breath." Just doing small things takes a lot of effort. Going up the slope, Dr. Frantz had to take a few steps and then stop to take a few breaths. "It helps me to understand what it would be like to live that way potentially day in and day out where every time you do something you know you'll have to do a little bit and rest," he said. Read the article

Sunday is Rare Disease Day - Get Ready to Raise Awareness

Thu, 25 Feb 2010 15:35:04 GMT

Rare Disease Day is this Sunday, February 28. You can get involved in raising awareness by 1) entering the photo and video contents on the Rare Disease Day website, 2) visiting the U.S. section of the site for ways to get involved, such as requesting a proclamation and sharing a story, and 3) spreading the word to your contacts on Facebook and Twitter. We encourage you to let us know about how you've gotten involved by sending your photos, videos and stories to Advocacy@PHAssociation.org.

Acupuncture Benefit Seen in Pregnancy to Treat Depression

Wed, 24 Feb 2010 21:37:34 GMT

2/23/10 (The Wall Street Journal) - Acupuncture designed to treat depression appears to improve symptoms in pregnant women, suggesting it as an alternative to antidepressant medication during pregnancy, a study found. A previous study showed that the risk of persistent pulmonary hypertension, a potentially serious lung condition, is significantly greater in newborns whose mother took antidepressants later in pregnancy. This new study indicates acupuncture may be a possible alternative to using antidepressants. Read article

New Medical Device, Shape-HF, Measures Patient Physiology to Define Shortness of Breath

Wed, 24 Feb 2010 21:32:26 GMT

2/23/10 (PRWeb) Saint Paul, Minn. - According to Dr. Myron Licht, defining the specific cause of shortness of breath is now more simple because of a new medical device available at the Apex Heart Care clinic. That device is called the Shape-HF and it measures a patient's physiology in an easy, six-minute test that helps physicians identify the predominant source of shortness of breath, primarily the heart or lungs. In addition to defining a patient's physiological limitation, the Shape-HF also measures responses to pharmacotherapy and cardiac resynchronization therapy and unmasks exercise-induced changes in pulmonary vasculature. Dr. Licht uses his Shape-HF to measure patients with a variety of heart and lung ailments including heart failure, heart shunts, chronic obstructive pulmonary disease, pulmonary hypertension, and even a double lung transplant. Read article

The Man Who Gives the Gift of Breath

Wed, 24 Feb 2010 21:24:36 GMT

2/21/10 (Healthzone.ca) Toronto, Canada - Dr. Shaf Keshavjee of Toronto General Hosptital is profiled in this article. He talks about the groundbreaking artificial lung transplants he's done to help pulmonary hypertension patients stay alive while waiting for donated lungs. Read article

Six States To Study Sickle Cell Disease And Thalassemias In National Pilot Project

Wed, 24 Feb 2010 21:17:56 GMT

2/20/10 (Medical News Today) - Medical researchers are developing a new surveillance system to determine the number of patients diagnosed with a family of inherited blood disorders known as hemoglobinopathies, including sickle cell disease, thalassemias, and hemoglobin E disease. Sickle cell disease is associated with pulmonary hypertension. Read article

United Therapeutics Withdraws PH Drug Application in Europe

Wed, 24 Feb 2010 21:12:12 GMT

2/19/10 (Washington Business Journal) - Silver Spring, Md.-based United Therapeutics Corp. has pulled the plug on its European marketing application to sell Tyvaso (TM) (treprostinil), an inhaled version of its pulmonary arterial hypertension drug, because its chances for approval in the European market seemed unlikely. Read article

Adventist Bolingbrook Hospital in Illinois to Open Center for Chronic Disease Management and Rehab

Wed, 24 Feb 2010 21:02:34 GMT

2/19/10 (The Bolingbrook Sun) Illinois - Adventist Bolingbrook Hospital facility manager Paul Gill is being honored for his commitment to the hospital. One of the works he's been involved in is readying a two-story, 19,000-square-foot building on the hospital's campus that will open soon as the Creation Health Center for Chronic Disease Management and Rehabilitation. It will operate as a multi-specialty outpatient center serving patients with chronic diseases such as pulmonary hypertension, diabetes, cardiac and pulmonary rehabilitation and congestive heart failure. Read article

Erectile Dysfunction Medication Now Being Used to Treat Other Diseases

Wed, 24 Feb 2010 20:55:05 GMT

2/17/10 (WNDU.com) Indiana - More than 30 million men take them for erectile dysfunction, but the drugs marketed to treat impotence are now being investigated to treat more than a dozen diseases and health problems. From fighting cancer, to helping hearts and lungs, doctors have found another use for Viagra. Genevieve suffers from pulmonary hypertension. Lack of oxygen causes her to pass out. "We just hear heart transplant, lung transplant. It was devastating. She's my little girl,” says Sandra Hernandez, Genevieve’s mom. Instead of a transplant, doctors prescribed Viagra in liquid form to open up her blood vessels. Read article

Sarcoidosis-Associated Pulmonary Hypertension: A Role for Endothelin Receptor Antagonists?

Wed, 24 Feb 2010 20:48:00 GMT

2/15/10 (Medscape) - Data on the treatment of sarcoidosis-associated pulmonary hypertension are scarce, while the variety of underlying pathophysiologic mechanisms are a major limitation in the implementation of a universal therapy. Addition of bosentan, a dual endothelin receptor antagonist, resulted in marked improvement in functional class and exercise capacity of the patient, allowing gradual tapering of steroids. Read article (requires free registration)

Missed our President's State of PHA Address? Watch the recording

Wed, 24 Feb 2010 20:02:36 GMT

PHA's President Rino Aldrighetti gave his annual "State of PHA" address last week about PHA's recent accomplishments and what we expect to achieve this year. Missed it? Don't worry - you can watch the recording, as you can with other e-Learning Event archives. Watch the State of PHA address | Watch other e-Learning Event archives

PHA "Path to a Cure" Climbers Garner News Coverage and Awareness of PH

Wed, 24 Feb 2010 16:54:20 GMT

As Dr. Robert Frantz, Jessica Lazar, PA, and Dr. Raymond Benza (pictured right in Tanzania) climb Mt. Kilimanjaro, their efforts are getting coverage in the news, raising much needed awareness about pulmonary hypertension. They have raised over $100,000 so far for PH research and patient services. Check out the latest stories:

Doc and Assistant to Climb Mountain to Raise Money (1/23/10, The Lebanon Daily News, Pittsburgh)
Local Doctors, Assistant to Climb Mount Kilimanjaro (2/8/10, KDKA 2 Pittsburgh)
Mayo Doctor to Climb Mount Kilimanjaro to Understand His Patient's Symptoms (2/15/10, The Post-Bulletin, Rochester, Minn.)
Clinicians Climb Mt. Kilimanjaro to Raise PH Awareness (2/17/10, PA Pro NOW)
PA Leaving for Mount Kilimanjaro Climb Today (2/18/10, ADVANCE Blog for PAs)
Healthcare Professionals Climb Mt. Kilimanjaro to Raise Awareness of Serious Lung Disease (2/23/10, Fox Business)
Doctor Readies for Kilimanjaro Climb (2/23/10, The Post-Bulletin, Rochester, Minn.)

Read full list of news coverage | Learn more about Path to a Cure campaign | Donate

Artificial Lung Tissue Developed for Premies with Hypoplasia, Which Can Lead to PH

Mon, 22 Feb 2010 21:44:18 GMT

2/11/10 (The Johns Hopkins news-Letter) - Although there have been various state-of-the-art treatments for pulmonary hypoplasia, later in life, infants can still suffer from pulmonary hypertension, hyaline membrane disease and acute respiratory distress syndrome. The laboratory of Fizan Abdullah combined with the Pediatric Surgery and Mechanical Engineering departments of Johns Hopkins worked to create an artificial alveolar-capillary membrane that could one day put an end to pulmonary hypoplasia. Read article

Research Results: Can Moderate-Severity Autologous Pulmonary Embolism in Rats Produce Persistent PH

Mon, 22 Feb 2010 21:36:00 GMT

2/12/10 (7th Space Interactive) - Objective: Test if moderate-severity autologous pulmonary embolism (PE) in Sprague-Dawley (SD) and Copenhagen (Cop) rats can produce persistent pulmonary hypertension. Conclusion: Neither strain developed persistent PH. Experimental models of PE designed to induce sustained PH and a robust inflammatory response appear to require significant, persistent pulmonary vascular occlusion. Read full summary

Healthcare Professionals Embark on Mt Kilimanjaro Climb in Support of PH Awareness and Research

Fri, 19 Feb 2010 19:53:00 GMT

2/19/10 (PRNewswire) Silver Spring, Md. - The Pulmonary Hypertension Association (PHA) announced today that three pulmonary hypertension (PH) specialists began their eight-day “Path to a Cure” journey to the 19,341-foot summit of Mt. Kilimanjaro to raise global awareness of PH, a disease that affects the heart and lungs. Robert Frantz, MD, Jessica Lazar, MPA, PA-C, and Raymond Benza, MD, (pictured left) are climbing Africa’s highest peak in an effort to bring attention to this rare and serious disease and to raise funds for PH research and other programs benefiting the PH community.

Read press release: English | Spanish (Doc) | Danish (Doc)

Learn more about the Path to a Cure campaign

The Role of the Protein HIF-2-Alpha in Chuvash Polycythemia, a Disease Associated with PH

Thu, 18 Feb 2010 17:35:07 GMT

2/9/10 (Journal of Clinical Investigation) - Individuals with a condition known as Chuvash polycythemia, which is caused by a specific mutation in the protein VHL, have a greater proportion of their blood volume occupied by red blood cells than do healthy individuals. They also have pulmonary hypertension and increased respiratory rates, although the mechanistic basis for these symptoms has not been determined. Now, Celeste Simon and colleagues at the University of Pennsylvania School of Medicine, Philadelphia, have identified a role for the protein HIF-2-alpha in the lung complications of Chuvash polycythemia by studying mice that model the condition. Of particular interest, HIF-2-alpha activity was found to be increased in lungs from mice that model Chuvash polycythemia. Further, as loss of one copy of the gene responsible for generating HIF-2-alpha in mice that model Chuvash polycythemia suppressed both the polycythemia and pulmonary hypertension, the authors suggest that inhibiting HIF-2-alpha might provide a new approach to treat Chuvash disease. Read full article

Kid with PH Perseveres, Mother Raises Awareness and Funds for PH

Thu, 18 Feb 2010 17:22:55 GMT

2/7/10 (HudsonReporter.com) Hudson County, N.J. - Daniel Gonzalez was diagnosed with pulmonary hypertension shortly after he was born. He is now 4 years old and enjoys the same things his peers do - SpongeBob SquarePants, drawing and dancing while his sister Mia sings - but he also has to deal with things his peers don't, like a cold becoming more serious or staying home from school because of the prevalence of the H1N1 Virus. Daniel's mother, Martha, raises awareness and funds for PH and will be attending PHA's International PH Conference this June due to a PHA scholarship. Read full article | Learn more about Conference

PHA Board Member Jack Stibbs Awarded for His Work for PHA

Tue, 16 Feb 2010 23:10:54 GMT

(Woodlands Online) The Woodlands, Texas - Over the years, Jack Stibbs has devoted his time to helping others, enriching the lives of countless young people and helping to fund finding a cure for his daughter who was diagnosed with the rare and often deadly disease pulmonary hypertension. Through his leadership, he has hosted numerous fundraisers to raise money for the Pulmonary Hypertension Association to help find a cure so no one else, especially children will have to deal with such a horrible disease. Read article | Learn more about Jack Stibbs

Aviptadil Successful in Phase II Clinical Trials for PAH, Plans to Test for Treatment of Secondary PH

Tue, 16 Feb 2010 22:18:02 GMT

(Gerson Lehrman Group) - Aviptadil, a vasoactive intestinal peptide (VIP), is a novel target for the treatment of primary pulmonary hypertension (PAH) that was shown to have beneficial effects on hemodynamics and safety in a phase II clinical trial for PAH. mondoBIOTECH and Lung Rx announced a partnership to bring Aviptadil to market, presumably to target the larger market of lung diseases with secondary pulmonary hypertension. Read article

The President's Annual State of PHA Address Scheduled for Feb. 17

Fri, 05 Feb 2010 18:01:05 GMT

PHA's President Rino Aldrighetti will be giving his annual "State of PHA" address on February 17 at 3:00 p.m. ET. He will talk about the continuing growth and strength in the fight against PH from this past year and expected to come. Register for Rino's State of PHA address

Adcirca® (tadalafil) Approved in Canada for PAH Patients

Thu, 04 Feb 2010 15:57:00 GMT

2/3/10 (PharmaLive) - Adcirca® (tadalafil) is now available in Canada for the treatment of pulmonary arterial hypertension (PAH). Adcirca® is the first once-a-day PDE-5 inhibitor oral therapy for the treatment of PAH. It is a vasodilator, which means it relaxes or opens blood vessels. “As a physician who treats this serious and life-threatening disease, I am confident that the convenience of this new oral treatment will help to promote compliance among patients, thus making a difference in their health-related quality of life,” said Dr. Sanjay Mehta, Professor of Medicine and Director of the Southwest Ontario PH Clinic in London, Ontario, and Medical Director, PHA Canada. Read article | Read Tadalafil (Adcirca®) Fact Sheet

Healthcare Reform Debate in Colombia Raises Concerns about Care for PH Patients

Wed, 03 Feb 2010 14:59:00 GMT

2/2/10 (Colombia Reports) - Decree 131 would fine doctors up to approximately $13,000 for prescribing medication or practicing medical and surgical procedures that are not covered by POS, the state-run health system. Monday night, the government appeared to concede to doctors' anxieties that this would severely compromise their medical practice, and told the National Medical Academy that doctors would not be fined. If the government hadn't backed down, Minister of Social Security Diego Palacio said, a pediatrician like himself would have been hesitant to prescribe costly yet effective procedures that save patients' lives, such as one treatment for pulmonary hypertension in infants which is not covered by POS. Read article

What is Paroxysmal Nocturnal Dyspnea (PND)?

Tue, 02 Feb 2010 17:12:20 GMT

2/1/10 (EmpowHER) - Paroxysmal Nocturnal Dyspnea (PND) occurs by a fluid build up in the lungs entering the alveoli (air sacs) while a person sleeps. During the day, the fluid is retained in the legs. At night, while sleeping, the body resorbs this fluid resulting in an increase in total blood volume and blood pressure leading to pulmonary hypertension or edema. Read article

Take a Virtual Tour of PHA's New Website Feb. 2

Mon, 01 Feb 2010 22:09:00 GMT

PHA's webmaster, Diane Greenhalgh, will be giving a virtual tour of our new website Tuesday, February 2 at 3:00 p.m. ET. Find where all your old favorites are on the new site and learn about cool new features. Register now | Watch archives from past e-Learning Events

Pregnancy and Unborn Children: What You Need to Know to Prevent Injury

Wed, 27 Jan 2010 21:07:57 GMT

1/25/10 (InjuryBoard.com) - Babies whose mothers took Selective Serotonin Reuptake Inhibitors, like Paxil, during pregnancy have been shown to be six times more likely to be diagnosed with persistent pulmonary hypertension and are at a significantly increased risk for suffering from serotonin syndrome (a syndrome of changes in mental status, autonomic instability, neuromuscular abnormalities, and gastrointestinal symptoms). Read article

Abbott to Suspend Marketing of Obesity Medicine Sibutramine in European Union Countries

Wed, 27 Jan 2010 21:03:47 GMT

1/21/10 (PR Newswire) - The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) voted to recommend the suspension of marketing authorizations for all anti-obesity medicines containing sibutramine. Outside the EU, sibutramine remains available and should be used according to the product label. The U.S. Food and Drug Administration's (FDA) review of SCOUT is ongoing. FDA has initiated a label change and the product remains on the market in the U.S. Australia's Therapeutic Goods Administration (TGA) took a similar action. Read article

Transcatheter Aortic Valve Replacement in Patients with High Surgical Risk

Wed, 27 Jan 2010 20:53:26 GMT

1/21/10 (Cardiology Today) - Transfemoral and transapical transcatheter aortic valve implantation in patients at prohibitive or high surgical risk were associated with comparable mortality as predicted by surgical risk calculators, results from a study suggested. If there is truth in repetitive data, it looks like transcatheter aortic valve replacement works. Read article

Oxygen Deficiency Provides a Link Between Obesity and Fatigue

Wed, 27 Jan 2010 20:43:32 GMT

1/20/10 (Helsinki Times) Finland - Obesity hypoventilation syndrome (OHS) increases the risk of contracting heart failure and pulmonary hypertension, among other illnesses. Read article

What is a Heart Catheterization?

Wed, 27 Jan 2010 20:37:35 GMT

1/21/10 (Journal of the American Academy of Physician Assistants) - Cardiac catheterization is an invasive technique that is used as a clinical tool for assessing the anatomy and physiology of the heart and its associated vasculature. Read journal article | Read more about diagnostic tests for pulmonary hypertension

Chelsea's Story - New Book about a PHer

Wed, 27 Jan 2010 20:30:36 GMT

1/19/10 (WKRG News 5) Mobile, Alabama - A new book is celebrating the life of a teenager, who passed away three years ago, after a double lung and heart transplant. The book, "It Gives a Lovely Light," is a tribute to Chelsea Groves, a young lady with a fighting spirit. She was diagnosed primary pulmonary hypertension at age eight, but fought with the will of someone much older, as she endured countless medical procedures, and ultimately a double lung heart transplant at age 13. Read article

Doctor and Physician Assistant Hit Stairs for Mountain Climb

Wed, 27 Jan 2010 20:24:33 GMT

1/20/10 (Pittsburgh Post Gazette) - Dr. Ray Benza, a physician at Allegheny General Hospital, and Jessica Lazar, a physician assistant who works with him on the hospital's cardiovascular clinical care team, plan to climb Mount Kilimanjaro in Tanzania next month to raise funds for research into pulmonary hypertension, and to experience briefly what their patients suffer every day. Read article | Learn more about how you can help

Wednesday Webinar on How to Make Lifestyle Modifications for Improved Quality of Life

Sat, 23 Jan 2010 00:10:58 GMT

What: Webinar (web login AND phone call)
When: Wednesday, January 27, 6:00 p.m. ET
Where: Register online for details on how to participate
Daily living with a progressive and terminal disease can be challenging. Medications help, but are expensive and can be difficult to use. Making small changes in daily activities and lifestyle can make a big impact in how PH patients feel. Join Janet Pinson, NP, for an online presentation on how to make small lifestyle modifications to improve your overall quality of life. PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

Learn About What to Expect at PHA's Conference in June

Sat, 23 Jan 2010 00:06:56 GMT

What: e-Learning Event Webinar (web login AND phone call)
When: Tuesday, January 26, 6:30 p.m. ET
Where: Register online for details on how to participate
Attend this webinar Tuesday about what to expect at PHA's 9th International PH Conference and Scientific Sessions taking place in Garden Grove, Calif., June 25-27. With the event only a few short months away, the International PH Conference Committee Co-Chairs, Linda Carr and Cindy Pickles, want to provide an overview of what to expect at Conference, let everyone know what's new, and answer questions. Jennie Carman will give an update on the Conference Scholarship Fund. PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

PHA's President Interviewed on Frederick, Md., Radio Station

Wed, 20 Jan 2010 19:00:50 GMT

PHA's President Rino Aldrighetti was interviewed on Frederick, Maryland's local 930 AM station about pulmonary hypertension. Listen to WFMD AM audio interview with News Anchor, Kevin McManus (large file)

PHA-UK Exposes Unfair Airline Practices

Wed, 20 Jan 2010 15:44:00 GMT

1/14/10 (Easier Travel) United Kingdom - Charity bosses are calling on airlines to stop penalizing passengers with breathing difficulties after ‘secret shopper’ research by national patient support charity, Pulmonary Hypertension Association UK (PHA-UK), launched this week at Westminster, unearthed a bewildering lottery of surcharges, policies and woeful customer service facing the estimated 90,000 potential ‘fit to fly’ disabled air travellers with lung conditions such as pulmonary hypertension (PH) or COPD who require supplementary oxygen in flight. Read article

PHers in Healthy Body, Healthy Mind Video

Wed, 20 Jan 2010 15:30:36 GMT

Check out some familiar faces from the PH community in this Healthy Body, Healthy Mind online video on pulmonary hypertension. Thanks to Ellen Harris for sending it over to us (she's the first patient featured in the video). Watch video

Conference Registration Now Open

Wed, 13 Jan 2010 18:31:35 GMT

We are excited to announce that registration for PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions Riding the Wave to a Cure is now open! PHA's International PH Conference will take place June 25-27 at the Hyatt Regency Orange County, Garden Grove, Calif., and is the largest meeting of PH patients, family members and medical professionals in the world. At Conference, PHA brings together people from across the country and the globe for a three-day event filled with education for patients, caregivers and medical professionals; networking opportunities and friendship! Register now to receive a $25 early-bird discount

Path To A Cure: AGH Clinicians To Scale Mt. Kilimanjaro

Wed, 13 Jan 2010 18:25:42 GMT

In Quest to Raise Global Awareness of Deadly Lung Disease
1/11/10 (HealthCanal.com) -- For healthcare professionals who specialize in the study and treatment of pulmonary hypertension (PH), there are few more fitting symbols than Kilimanjaro of the daunting challenge and quest to find a cure for this debilitating and deadly lung disease. On February 19, 2010, two members of the Allegheny General Hospital Gerald McGinnis Cardiovascular Institute (CVI) will climb Mt. Kilimanjaro as part of a national campaign established by the Pulmonary Hypertension Association (PHA) – called Path to a Cure – to raise awareness about the disease and money to support PH research programs around the country. Read article | Learn more about how you can help

Conference Registration Opens Wednesday

Sat, 09 Jan 2010 16:19:00 GMT

PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions is the largest meeting of PH patients, families, caregivers and PH treating medical professionals in the world. The International PH Conference provides education, networking opportunities and, above all, hope for a cure. Join us June 25-27 in Garden Grove, Calif. as we are Riding the Wave to a Cure. Learn all about what Conference has to offer

Former Furniture Store Owner Alban Needs Kidney Transplant

Sat, 09 Jan 2010 16:07:00 GMT

(NewarkAdvocate.com) -- Diagnosed with high blood pressure, he suffered from what doctors now think is pulmonary hypertension. His lungs became so weak that he needed to be on oxygen and use five inhalers. He was unable to work for two years. He was able to get his pulmonary hypertension under control last year through medication, and his lungs improved. But his high blood pressure had destroyed his kidneys. Read article

Climbing Kilimanjaro to Serve Allegheny General Doctor's Patients

Fri, 08 Jan 2010 16:15:00 GMT

(Pittsburgh Tribune-Review) -- Dangling from the rope attached to his safety harness, nearly halfway up the face of a 500-foot cliff, Dr. Raymond Benza stared at the ground, half-dazed from bouncing off the rocks. He could think only about his wife and son at home. "I realized this is what our patients go through every day," said Benza, 46, a heart and lung specialist at Allegheny General Hospital in the North Side. Next month, Benza plans to reach a new height by trekking to the 19,000-foot summit of Africa's Mt. Kilimanjaro with Jessica Lazar, a physician's assistant at Allegheny General, and Dr. Robert Frantz, of the Mayo Clinic in Rochester, Minn. Read article | Read more about their climb and how you can help

Early Treatment Crucial for Deadly Disease

Fri, 08 Jan 2010 16:08:00 GMT

(The Camrose) Canada -- We often hear about the perils of high blood pressure, but many Canadians are unaware that high blood pressure in the lungs - known as pulmonary hypertension (PH) - can also have fatal consequences. This month, the Pulmonary Hypertension Association of Canada hopes to raise awareness about PH - a rare but serious disease that can strike at any time and has no regard for race, age or gender. Read article

Pulmonary Hypertension Bill Moves Forward

Wed, 06 Jan 2010 16:04:00 GMT

(Gazette.net) -- A bill moving through Congress, pushed by the national Pulmonary Hypertension Association of Silver Spring, could provide relief to people with pulmonary hypertension. The Tom Lantos Pulmonary Hypertension Research and Education Act would provide more funding for research of the disease and education of physicians about signs to look for to diagnose and treat the disease properly, said Rino Aldrighetti, president and CEO of the association. Read article | Take action

Dr. Tom Petty, Home Respiratory Icon, Dies At 76

Wed, 06 Jan 2010 16:00:00 GMT

(HMENews) -- The HME industry lost a pioneering researcher and tireless patient advocate Dec. 12 when Dr. Tom Petty, the father of long-term oxygen therapy (LTOT), passed away at his home after a long struggle with pulmonary hypertension. He was 76. Read article

Researchers Revisit Pulmonary Arterial Hypertension Survival

Tue, 05 Jan 2010 15:57:00 GMT

(EureaAlert) -- Setting out to determine the survival of patients with pulmonary arterial hypertension (PAH), researchers at the University of Chicago Medical Center and their colleagues also discovered that an equation used for more than 20 years to predict survival is outdated. Accordingly, they developed and recently published a new survival prediction equation that will impact clinical practice and the drug development process. Read article

Doctors Induce Clinically Dead State To Give Man New Life

Tue, 05 Jan 2010 15:54:00 GMT

(azcentral.com) -- Robert Langefeld has been living close to death for months now. Langefeld was clinically dead for about 40 minutes while doctors removed the blood clots blocking his pulmonary arteries. His condition is major-vessel thromboembolic pulmonary hypertension. Read article

NeoPharm to Investigate Treatment for Deadly Lung Disease

Tue, 05 Jan 2010 15:49:00 GMT

(onemedplace) -- NeoPharm, a biopharmaceutical company specializing in cancer treatments, has filed an investigational new drug application with the U.S. Food and Drug Administration (FDA) for the treatment of a deadly lung disease. The drug candidate IL13-PE has the potential to be the first effective therapy for idiopathic pulmonary fibrosis (IPF), which kills an estimated 40,000 people in the United States each year. Read article

New Special Interest Email Groups for PHers

Mon, 04 Jan 2010 15:45:00 GMT

Now, it's easier than ever to connect with people who know what you're going through. PHA has three new email groups for special populations of patients and caregivers -- young adult patients, patients with associated illnesses and family members of PH patients. These new groups require a free Google account. Learn more and join now

Pfizer Gets European OK for Intravenous Revatio

Mon, 04 Jan 2010 15:40:00 GMT

(ABC News) -- Drug developer Pfizer Inc. said European regulators approved an intravenous version of its high blood pressure drug Revatio. The drug was already sold in Europe as a tablet for a specific type of high blood pressure called pulmonary arterial hypertension, which affects arteries in the lungs. Also, the Food and Drug Administration approved the tablet version in 2005 and the intravenous version in November. Specifically, the European Commission has now approved the intravenous version for patients now prescribed oral Revatio and temporarily unable to take oral medicine but otherwise clinically stable. Read article

Path to a Cure Donations Matched

Mon, 04 Jan 2010 00:52:00 GMT

In February, Drs. Ray Benza and Robert Frantz and Jessica Lazar, PA, will be climbing Mount Kilimanjaro, raising awareness and funds for PH. Donate now and every dollar will be matched by Actelion's $50,000 Path to a Cure Matching Fund. Donate to the Climb | Other ways you can help

H1N1 Flu Notice

Sun, 03 Jan 2010 15:35:00 GMT

Due to the pandemic nature of H1N1 in our country today, if you are a PH patient, transplanted patient or direct caregiver, you should contact your PH (or transplant) physician immediately for guidance concerning whether vaccination is the right course for you. Learn more from the Centers for Disease Control

Finding Hope: Woman Seeks To Help Others With Lung Disease

Sat, 02 Jan 2010 15:31:00 GMT

(Rapid City Journal) -- At first, Cheryl McKnight couldn’t convince those around her something was wrong. She was 42 and feeling out of breath and dizzy after the slightest exertion. “I kept telling people I can’t breathe,” said McKnight, who lives in Rapid City. Read article

Hannah Lahmeyer's Journey in the Orlando Sentinel

Thu, 31 Dec 2009 16:54:00 GMT

(Orlando Sentinel) -- For Hannah Lahmeyer, the slight embarrassment of having to fill her Viagra prescription is nothing compared with the years of tortuous treatments for her relatively unknown and incurable condition of pulmonary hypertension. The south Orlando preschool teacher is among the growing number of patients taking erectile dysfunction drugs to treat the disease, characterized by abnormally high blood pressure in the arteries of the lungs. Florida Hospital, where Lahmeyer is receiving treatment, has the only comprehensive program in Central Florida for pulmonary hypertension patients. Read article