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PH Action Alert
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Journeys Memorials
Planning Ahead?
Regaining a Dream
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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 
 
Bowl PHor Cure
May 23, 2009
Wappingers Falls, N.Y.
Vol 10/Number 6 March 20, 2009
PHA logoPHANews Editor - Sally Maddox
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Contributing Editors - PHA staff
 
reaching over 6500 subscribers
www.PHAssociation.org
Take ActionSENATOR SPECTER CHAMPIONS EFFORT TO SECURE INCREASED NIH FUNDING

Senator SpecterSend a Thank You
 
On February 17, 2009, President Obama signed into law the American Recovery and Reinvestment Act (H.R. 1). The law includes an amendment that allocates $10 billion towards the National Institutes of Health (NIH) for research over the next two years!  
 
The increase in funding means that more money will be available to the National Heart Lung and Blood Institute (NHLBI), the institute within NIH that houses pulmonary hypertension research. The NHLBI will use a portion of these funds to support two-year research grants as part of the new NIH Challenge Grants in Health and Science Research. Two of the Challenge Grant categories within the NHLBI are specific to PH.
 
Please take a few minutes to thank Senator Arlen Specter of Pennsylvania who championed the effort to secure the $10 billion in funding.
You will need to submit your thank you email directly to Senator Specter's website.Get started here.
SPOTLIGHT ON SOUTHERN CALIFORNIA PHA ON THE ROAD FORUM
PHA on the RoadJoin PHA in Costa Mesa, Calif., on Saturday, May 30, at the Hilton Orange County for the first of the 2009 PHA on the Road: PH Patient and Families Education Forums!
 
Specialized session topics at this event include:
  • "What is on the Horizon for PAH (Clinical Trials)" with Richard Channick, M.D.; UCSD Medical Center
  • "Eating Better to Improve your Health" with Glenna Traiger, R.N., M.S.N.; UCLA Medical Center
  • "What Measures Do I Need to Take When I Travel?" with Joy Beckmann, R.N., M.S.N.; Harbor-UCLA Medical Center
  • "How Do I Explain to My Family I Have Pulmonary Hypertension" with Ron Oudiz, M.D.; Harbor-UCLA Medical Center

Experience a PHA Conference favorite with the "Journeys" Luncheon, and in the afternoon become part of the fight to raise awareness of PH at the presentation, "The Right to Fight Back," featuring members of PHA's Board of Trustees and PHA staff.

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 Central Florida PHA on the Road
 
For more information on any of the four 2009 PHA on the Road Forums contact Doreen at ontheroad@PHAssociation.org or 301-565-3004 x779.
e-LEARNING EVENT: LEARN HOW TO FIGHT BACK THROUGH SPECIAL EVENTS
Deirdree-Learning Event Series
Special Event Planning 101
March 26, 1:00 p.m. ET
Webinar - web AND phone
 
Are you a PH patient, family member, friend or medical professional who is interested in fighting back against PH? You can be a part of the cure - through fundraising events!
 
Please join PHA's Special Events Coordinator Deirdre Farrell for this webinar to learn how anyone can plan a Special Event to raise awareness and funds for PHA and PH research. No special skills or experience needed! If you have experience planning events for PHA we encourage you to attend to share your knowledge and learn about new resources available for event planners! 
Learn about the resources and assistance PHA can offer you to make your event a success! We will also discuss how to:
  • Use online tools for fundraising and event registration
  • Involve the media
  • Solicit sponsorships
  • Run a silent auction at any kind of event

Have a particular question or topic you would like covered during the webinar? Please email your questions to events@PHAssociation.org.

JOURNEYS MEMORIALS REMEMBER THOSE WHO INSPIRE OUR FIGHT

Our Journeys is a way for each member of the PH community to share their unique story. It includes memorials to members of the PH family who have left behind a legacy of hope and love. Journeys Memorials provide a home especially for the stories of those who have gone before us and in whose memory we continue to educate, advocate, fight, and hope. These stories also remain part of the larger Our Journeys collection.
PLANNING AHEAD?

PHA Can Help With Our Estate Planning E-Brochures
 
How To Prepare To Meet With Your Attorney
 
Planned gifts can make a lasting difference to the people and causes that are important to you. When creating your estate plan, it is important to work with an attorney who specializes in wills, trusts or estate planning. Take advantage of PHA's free brochures and download this helpful outline to prepare for your initial meeting. 
 
Check out this brochure and many more free resources on PHA's Planned Giving web section.
REGAINING A DREAM

A Successful Double Lung Transplant Allows Massachusetts' Teen To Swim
 
Cassie Tessier loves to swim and, for the first time in more than eight years, she will soon be able to take the plunge into water once again.
 
The 17-year-old girl, who just received a double-lung transplant, was diagnosed in 2000 with pulmonary hypertension. The diagnosis, and her Flolan treatment, came just months after her placement on a local swim team.
 
The long-anticipated swim will take place this summer after Cassie has recovered from the Jan. 31 transplant. Read article
PH IN THE NEWS
St. Patty's Day Tournament Nets Big Catches
(South Florida Sun-Sentinel) -- A total of 166 anglers fished on 60 boats. The 19th annual Small Boat Charity Fishing Tournament proceeds will help defray the costs of medical care for Tracey- Ann Robinson, 11, of Coconut Creek, who has pulmonary artery hypertension and complications from sickle cell anemia. Read article
 
Pulmonary Hypertension In Children May Result From Reduced Activity Of Gene Regulator
(Sciencedaily.com) -- Too little activity by gene regulators called PPARs appears to be a major player in the irreversible lung damage that can occur in children with heart defects, researchers say. Read article
 
United therapeutics Inhaled PH Drug to Launch New Trial
(Forbes.com) -- The approval for United Therapeutics Corp's inhaled drug to treat PH could be delayed after U.S. Health Regulators called for an additional study, which analysts do not see as a major roadblock. Approval of the drug, Tyvaso, is expected to be pushed back by about six months. Read article

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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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.