July 11, 2012

       
 
PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President
    Wojo Golf Tournament

The special in PHA events...

Each year there are about 60 events held throughout the U.S. to benefit PHA research and patient-serving programs. We call these special events, but it's really the people who are special. » Read more

What's In This Issue
   

» Spotlight On... District Visits
» Get Smart
» Website Discoveries
» PH Community Scoop

» From the PHA News Desk
» Medical Community Bulletin
» Also of Interest
» PH News Headlines

Spotlight On...
   

This August Tell Congress How They Can Help Improve Early Diagnosis!

On average, it takes PH patients two years before they are diagnosed with pulmonary hypertension. The Tom Lantos PH Research and Education Act (HR1810, S775) will fund education programs for medical professionals and the general public so that PH patients can be diagnosed earlier and receive the treatments and support critical to managing their disease. This August, when Members of Congress leave Washington, D.C., and head back to their local offices, take advantage of the opportunity to meet with them and ask for their support. » Learn more

Get Smart
   

Lobby Locally: Making the Most of Election Season to Fight PH

Friday, July 13, 2:00 p.m. ET/11:00 a.m. PT
In a few weeks, your senators and representative will leave D.C. They’ll spend August, and much of the fall, back home in your state. During this webinar, you’ll learn how to make the most of this chance to get them thinking about the issue that matters to you: pulmonary hypertension! » Register now

   

Newly Diagnosed? What You Need to Know

Tuesday, July 17, 3:00 p.m. ET/12:00 p.m. PT
If you or someone you know was recently diagnosed with pulmonary hypertension, please join us for a webinar especially designed for newly diagnosed patients. Maribeth Duncan, ANP-BC, will review the basics of what every pulmonary hypertension patient should know about PH, its treatment and coping with this disease. » Register now

   

Caregivers Telephone Support Group

Wednesday, July 18, 1:30 p.m. ET/10:30 a.m. PT
Call in toll-free to connect, learn and share strategies and experiences about caring for an adult with PH. The call lasts for one hour — join us for as long as you like. » Learn more

   

Parents Telephone Support Group

Thursday, July 19, 8:30 p.m. ET/5:30 p.m. PT
Were you at PHA's International PH Conference and want to reconnect with the other parents of PH kids you met? Did you miss Conference, but want to get up to speed? Call in toll-free to reconnect and compare notes. » Learn more

Website Discoveries
   

Things I Found by Kathryn Frix: Transplant and PH

If I were to list frequently asked questions found throughout the years on the PHA Discussion Board, lung transplant issues would be a part of that FAQ. Recently while reading a post about transplant, this phrase stayed with me: "the whole thing brings us a lot of fear.” » Read more

PH Community Scoop
    Caffrey Family

Congratulations, Shari Caffrey!

Shari, founder of Taylor's Wish, an organization created in memory of her young daughter, is one of three 2012 Local Lady GODIVA Summer Honorees! Each honoree will receive a grant of $1,000 toward her cause. At the end of the year, GODIVA will choose one Local Lady GODIVA Honoree and contribute $10,000 to her cause or organization. » Learn more

    Volunteers

Thank You, Conference Volunteers!

PHA thanks the nearly 200 patients, caregivers, supporters and doctors who volunteered at the sessions, Kids’ Room, Welcome Table, Store and Registration. There’s no way PHA’s 10th International PH Conference would have been such a tremendous success without the hundreds of hours given by our friendly and supportive volunteers. Thank you!

   

A Kitchen Table Moment

It was around a kitchen table that PHA’s founders first met to discuss the birth of an organization. That same table was featured at PHA’s 10th International PH Conference, becoming the site of even more great ideas. » Find out what happened at the kitchen table at Conference

From the PHA News Desk
    beakers

Keep the Momentum Toward a Cure for PH Going

We all want better treatments and a cure for pulmonary hypertension. Dr. Karen Fagan, chair-elect of PHA’s Scientific Leadership Council, tells us that PH research is moving forward: “Some steps are small, some large but the momentum is clearly moving us the right way.” Keep the momentum going by supporting PH research.

Medical Community Bulletin
   

Save the Date for the 2013 PH Professional Network Symposium!

The 2013 PH Professional Network Symposium, The Power of Teamwork: 10 Years of Professional Collaboration in PAH, will take place Sept. 26-28 in Arlington, Va. Mark your calendars now to attend this unique educational and networking event for PH-treating allied health professionals! » Learn more

   

New Recordings Available at PHA Online University

Two recordings from the 4th International Neonatal and Childhood Pulmonary Vascular Disease (NCPVD) Conference are now available: Challenges in the Acute Postoperative Management of PH After Congenital Heart Surgery (Lara Shekerdemian, MD) and Cardiac Catheterization in PH Beyond PVR (Hunter Champion, MD). Stay tuned for the release of sessions from the 5th Annual International NCPVD Conference. » Visit PHA Online University

Also of Interest
    health insurance

Health Reform and the Supreme Court: What Does It Mean for You?

On June 28, the Supreme Court declared the Affordable Care Act (ACA) constitutional. The ACA, commonly known as healthcare reform, contains several provisions that benefit PH patients and their families, including the elimination of pre-existing condition coverage exclusions and the removal of lifetime benefit caps. » Learn more

PH News Headlines
   

» Actelion Pharmaceuticals Announces U.S. Food and Drug Administration Approval of Supplemental New Drug Application for Second Generation Veletri(R) (epoprostenol) for Injection

» Regent Square Doctor Taking on Bike Challenge to Raise Awareness of Pulmonary Hypertension

» Congestive Heart Failure Patients May Benefit from a Test for Pulmonary Hypertension

» Older Women May Be at Risk for Pulmonary Hypertension

» More News

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Upcoming Events

July 13, 2012
Lobby Locally: Making the Most of Election Season to Fight PH
webinar: online and phone

July 17, 2012
Newly Diagnosed? What You Need to Know
webinar: online and phone

July 27-29, 2012
Scleroderma Foundation National Patient Education Conference
Grapevine, Texas


» Go to the Events Calendar

Video Spotlight

Pat and Jerry Paton, Co-Founders of PHA

Watch this dynamic video about PHA and the work we are doing with the PH community. » View the video

Generation Hope After Dark 2012
 
 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.