PHA News
In This Issue
PH Action Alert - Tax Deductions
PH Action Alert - Insurance
PH Tip Sheets
Central FL PHA On The Road
2009 PH Resource Network Symposium
e-Learning Event Recording
PH in the News
Car Donations
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Upcoming Events
1st Annual Scramble For A Cure Golf Tournament
April 18, 2009
Las Vegas, Nev.
 Crawfish and a Cure: 2nd Annual CurePH Bug Boil
April 18, 2009 
Spur a Cure 2009
May 2, 2009
Phoenix, Ariz.
Beef and Beer Fundraiser
May 8, 2009
Philadelphia, PA
 2nd Annual Bocce for Better Breathing
May 9, 2009
Medford, MA
Putt - Putt Fore PH
May 16, 2009
West Jordan, Utah
 2009 Carolina's 5K PH Run/Walk for a Cure
May 17, 2009
Clemmons, NC 
Bowl PHor Cure
May 23, 2009
Wappingers Falls, N.Y.
Vol 10/Number 7 April 3, 2009
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
reaching over 6500 subscribers

President Obama's budget proposal reflects a commendable commitment to reviving the economy and reforming our health care system. However, the budget also contains a proposal that would send the wrong message at the wrong time to those who support non-profit organizations like PHA. 
The proposal would limit the federal tax deduction that individuals earning more than $250,000 may claim for charitable contributions, effectively devaluing charitable gifts made by the very people who are in a position to make substantial donations at a time when they are desperately needed.  
Join PHA and other non-profit organizations in opposing the President's proposal.
Contact your Members of Congress

The Health Insurance Coverage Protection Act (H.R. 1085; S. 442) was introduced into both the House and the Senate on Feb. 13. If passed into law, the bill will increase lifetime caps to $10 million on group health plans. This increase on health insurance caps is critical for pulmonary hypertension patients who, along with patients suffering from other chronic, life-threatening disorders, are often faced with thousands of dollars in medical expenses yearly.

Get your senators' and representative's co-sponsorship and learn more about the Health Insurance Coverage Protection Act.
Contact your senators | Contact your representative
PHA Offers Some Helpful PH Tips Online!

Along the way, PHA has found some helpful hints that every PH patient and community member should know. These tips range from "Traveling With PH" to "Ideas To Get You Through the Day-to-Day."

Recent additions to the list are:

Tips from the PH Resource Network Education Committee and PHA's Pulmonary Hypertension: A Patient's Survival Guide, are also included in the PH tip sheets.

Sign Guy - PHA on the Road Logo

Join PHA in Lake Buena Vista, Fla., on Saturday, June 6, at the Buena Vista Palace Hotel for the second of the 2009 PHA on the Road: PH Patient and Families Education Forums!
Specialized session topics at this event include:

  • "Emergency Situations" with John Swisher, M.D., Ph.D.
  • "Life After Being Diagnosed with PAH" with Sally Maddox, PHA Board of Trustees
  • "Understanding Test Result Number" with Melisa Wilson, A.C.N.P.-B.C., M.S.N.
  • "PH and Connective Tissue Disease" with Charles Burger, M.D.

Experience a PHA Conference favorite with the "Journeys" Luncheon when John Swisher, Ph.D., M.D., Daniel Layish, M.D., and their patients share their PH stories. The day's program also includes opportunities for patients to network, a session for caregivers to discuss the impact of PH on their lives, and "The Right to Fight Back," a session on how individuals can promote PH awareness. A complete list of speakers and topics can be found on the PHA on the Road website. Registration is FREE but required. Register online

Coming up in the next issue: Spotlight on Southeast Michigan PHA on the Road
For more information on any of the four 2009 PHA on the Road Forums contact PHA at or 301-565-3004.


Symposium Banner 

Allied health professionals are buzzing about PHA's 2009 PH Resource Network Symposium, Leading Progress, Creating Partnerships: Empowering the Interdisciplinary PH Team. We've already received dozens of online registrations for this September event.
With dual-track educational sessions targeted at novice and experienced PH caregivers, a chance to raise awareness on Capitol Hill on Advocacy Day, and the availability of free registration to the first 300 PH-treating allied health professionals*, PHA only expects the excitement to build as September approaches.
The 2009 Symposium will host more than 70 speakers presenting on a variety of engaging topics, such as:

  • "Exerting an Influence" by Michael Petty, C.N.S.
  • "YOU Make It Happen" by Donna Cardillo, R.N., M.A.
  • "Current Research in PAH" by Michael McGoon, M.D.
  • "Care for the Caregiver" by Rev. Steve White, Ph.D.
  • "Palliative Care and PAH" by Keith Swetz, M.D.
  • "REVEAL Outcomes" by David Badesch, M.D., Hap Farber, M.D. and Abby Krichman, R.R.T.

For more information about Symposium, or to register, visit our Symposium website or email
*A $50 refundable deposit is required. Visit website for details.


Special Event LogoYou can hear the recording and see the presentation in our e-Learning Event archives!
Learn the basics of event planning, what PHA can do to help you, and how to use online fundraising tools to make event planning easy and fun. You can help make a difference by building awareness and fundraising for the PH community! 
Questions or comments about fundraising events? E-mail
View more past e-Learning Event archives
Pulmonary Hypertension Consensus Document Released
(HealthDay News) -- Although recent advances have led to increased recognition of new therapies for pulmonary hypertension, this complex and rare disorder has been inadequately explored, according to an Expert Consensus Document. The document was published online March 30 in the Journal of the American College of Cardiology to coincide with the American College of Cardiology's 58th Annual Scientific Sessions held March 29 to 31 in Orlando, Fla. Read document
Taiwan Foundation For Rare Disorders focuses on more patient support despite decrease in public donations
(TFFRD March Newsletter) --Taiwan Foundation For Rare Disorders continues to provide new services in addition to already existing ones as the foundation suffers from a reduction of public donation income. The new services include performing classes, the establishment of Heavenly Melody Chorus, and more than 10 experience camps, one-day trips and summer camps held. Read newsletter
Cure PH Bug Boil at Town Green Park
( --The second annual Cure PH Bug Boil, set for Saturday, April 18, in The Woodlands, Texas, will raise funds for research to help find a cure for pulmonary hypertension. All proceeds are used to fund national research and awareness of the disease to discover better treatments and hopefully find a cure. Read article

Read more Headline News...

Car ImageDonate Your Car, Truck, RV or Boat!
Are you interested in donating your vehicle to PHA and receiving a tax deduction? It's easy to make a vehicle donation that helps you AND supports PHA's programs and services.
Here's how it works: Call toll-free 1-877-537-5277 to speak with a CARS vehicle donation representative. They will schedule a pickup that's convenient for you, and provide you with confirmation of your donation. Donate vehicle online
Free pickup, no hassle, a tax deduction, and they'll take a vehicle in any condition, running or not!

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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.