March 7, 2012

PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President
    Pediatric Research

Pediatric Research: The Power of One ... and a Half

It never fails ... One person deciding to take action becomes a driver for a whole community. Last Friday, PHA Board Member Steve Van Wormer emailed us a public service announcement he had made to support the pediatric research and mentoring that has become an important target for PHA. » Read more

What's In This Issue

» Spotlight On... McGoon Webinar
» Get Smart
» Living Better with PH
» PH Community Scoop

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

Spotlight On...

PH Treatments: What's on the Horizon?

Friday, March 23, 2 p.m. ET/11 a.m. PT
It is an exciting time for PAH research. Over the past 13 years, nine PAH therapies have been approved by the FDA. In this session, hear from Dr. Michael McGoon of the Mayo Clinic about currently available treatments and treatments in the pipeline. » Register now

Get Smart

Webinar: Creativity and Healing through Blogging

Thursday, March 8, 6 p.m. ET/3 p.m. PT
Medical research links creativity to improved health. Join PH patients and active bloggers Leigh McGowan and Colleen Schnell as they discuss their experiences with blogging as a form of creative self-expression. Get blogging tips and find out more about the online PH blogging community. » Register now


Staying Active with PH Recording Now Available

If you missed the recent live webinar on “Life After Diagnosis: Staying Active with PH,” a recording of the presentation is now available in PHA Classroom. This recording discusses the various ways you can stay active with PH and how to maintain energy to continue doing the things you love. » View Recording

Living Better with PH

Ask a Question, Reach a Mentor!

Support is just an email away! Our team of PH Email Mentors is standing by for patients, caregivers and parents looking for one-on-one support. Don’t have time to search through mentor profiles? Contact a PH Email Mentor through our new “Ask-a-Question” page! Find a mentor | Ask a question

PH Community Scoop

Pediatric Webinar Series: Traveling with My PH Child

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! » Register now


Caregiver Webinar: Recognizing and Coping with Depression

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

    Katie Tobias and friends at Strut Your Stuff Against PH

Attendees Strut Their Stuff Against PH

PHA extends heartfelt thanks to Katie Tobias, her family and friend Lisa Granahan for bringing their community together in Wilkes-Barre, Pa., to strut their stuff in the fight against PH. This peacock-themed event, held at the Woodlands Inn, included food, music by a live band, dancing and raffles – raising more than $1,100 for PHA!

From the PHA News Desk

Meet PHA's Newest "PHriend" Phineas

Phineas is an adorable plush character who will help brighten your day. Great for kids and adults! Keep him on your desk, night stand or any place you might need a “PHriend.” » Snatch him up at the special introductory price of $12.


Ask Your Transplant Questions and Share Your Story!

PHA's Transplant email group brings together patients considering transplantation, transplant survivors and patients or family members curious about the transplantation process. To find out more about this group, contact Meghan Finney at or join the Transplant email group now.

Medical Community Bulletin

Building Medical Education in PH Event in San Francisco

March 9-10, San Francisco, Calif.
The 5th Annual Neonatal and Childhood Pulmonary Vascular Disease Conference, hosted by the University of California – San Francisco, will discuss the great strides that have been made in understanding the pathobiology of pulmonary vascular disease and the new therapeutic options that have emerged. » Learn more


PHA Online University: New Recording Available

A recording of the webinar “How to Help Your PH Patients Successfully Apply for Social Security Disability” is now available on PHA Online University. » View recording

Also of Interest
    Caring Voice Coalition

CVC Launches Disability Guide and Journal

Caring Voice Coalition (CVC) now offers a disability guide and wellness journal to help you through the SSD application process. These resources are a part of CVC’s Disability Program, which provides free assistance for PH patients applying for SSD. Download the guide and journal | Learn more about SSD

    Insurance Summary of Benefits Coverage

Insurance Companies to Provide Better Explanation of Health Coverage

New rules require health insurance carriers to provide clear and straightforward information on what your health plan covers. Starting Sept. 23, 2012, companies will have to provide an easy-to-understand Summary of Benefits Coverage and a glossary of terms. » Learn more

PH News Headlines

» PHA Europe and Bayer Healthcare: 'Breathtaking' Campaign Launched to Raise Awareness of PH on Rare Disease Day 

» PAH Can Be Overlooked

» Living with Pulmonary Arterial Hypertension

» PH Patient and West Richland Man Watches Blood Drive He Organized from Afar after Receiving a Double-lung Transplant

» Brave Mum in the U.K. Thanks Donor after Transplant

» Organ Donation Message Comes Home

» More News

Connect with PHA

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Email a mentor. Patients and caregivers are ready to support you.

Upcoming Events

March 9-10, 2012
Educational Opportunity for Patients and Medical Professionals: 5th Neonatal and Childhood Pulmonary Vascular Disease Conference
San Francisco, Calif.

March 24, 2012
The 2012 Woodlands Crawfish Festival
The Woodlands, Texas

March 24, 2012
Spur a Cure for PH
Phoenix, Ariz.

» Go to the Events Calendar

Video Spotlight

Pa. State Rep. Keith Gillespie interviews members of the PH community.

Pa. 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. » Learn more and watch the video

Generation Hope Blog: Staying Active with PH
Web of Friends: Help your family and friends support you and PHA. Start fundraising online.

Need more information? Contact
Pulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910
Office: 301-565-3004 | Fax: 301-565-3994

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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.