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Action Alert - New PH Bill!
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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 4 February 20, 2009
PHA logoPHANews Editor - Sally Maddox
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Contributing Editors - PHA staff
 
reaching over 6500 subscribers
www.PHAssociation.org
ACTION ALERT

Request Co-sponsorship for New PH Bill!

Representatives Brady and CappsOn Friday, February 13, Reps. Kevin Brady (R-TX) and Lois Capps (D-CA) demonstrated the importance they place on finding a cure for PH by introducing the Tom Lantos PH Research and Education Act of 2009 as H.R. 1030.

Thanks to the relationships that PH advocates like you have been building with Members of Congress, seven additional representatives co-sponsored the bill the day it was introduced!

Let's keep this momentum going and bring that list to 25 co-sponsors by April 1! Then, let's build on our success one month at a time until we have half the House, 218 representatives, co-sponsoring.
  1. Use PHA's online advocacy tool to send an e-mail to your Representative requesting their co-sponsorship or thanking them for their support.
  2. Share the alert with ten friends. 
  3. Consider following up your co-sponsorship request with a phone call or face-to-face visit.

Contact Katie at advocacy@PHAssociation.org with questions or for more information!

PHA ON THE ROAD FORUM TOPICS ANNOUNCED!
PHA On The Road Banner 
 
PHA on the Road: PH Patients and Families Education Forum topics, confirmed speakers and information about visiting the four regions are now posted on the event website.
 
Registration is NOW OPEN! PHA on the Road is FREE for attendees, but registration is required.
For more information, contact Doreen at ontheroad@PHAssociation.org or 301-565-3004 x779.
HELPFUL SOCIAL SECURITY ADMINISTRATION UPDATES
The following Social Security Administration (SSA) updates were sent to us from a patient and we thought they were worth passing along:
 
 
 
 
You can receive customized updates from both the Social Security Administration and the Centers for Medicaid and Medicare Services.
WATCH STATE OF PHA ADDRESS

e-Learning Event SeriesRino Aldrighetti
State of PHA  -- An Annual Update from PHA President Rino Aldrighetti
Webinar recording available!

2008 was a year of continuing growth and strength in the fight against PH. This webinar recording is an opportunity to hear from PHA's President on what has taken place and what can be expected to come.

 

You can learn about topics from exercise & nutrition to finding patients near you. Check out the archives today!

PHA's monthly e-Learning Event series is made possible through unrestricted educational grants from Eli Lilly & Company and Pfizer Inc.
PH IN THE NEWS
Teen had Artificial Lung, Now Playing Soccer Again
(The Canadian Press, Canada) -- In a world first, doctors at Toronto's Hospital for Sick Children used an external artificial lung that had previously been used only on adults to keep her alive until donor lungs came available for transplant. Katie had been diagnosed with pulmonary hypertension, a rare condition that constricts blood vessels within the lungs and forces the heart to work harder than usual to pump blood to the lungs. The stress on her heart made it swell to four times normal size. Read article
 

Bayer Starts Phase III Study of Lung Drug riociguat
(Reuters, United Kingdom) -- Bayer AG (BAYG.DE) has entered phase III of testing its experimental pulmonary-hypertension drug riociguat after the pill showed promise in an earlier trial, the company said on Monday. Read article
  
Medical ProfessionalsBUILDING MEDICAL EDUCATION PROGRAM
2nd International Conference on Neonatal and Childhood Pulmonary Vascular Disease
March 13 - 14, 2009
Hotel 480 (Soon to be Marriott Union Square)
San Francisco, Calif.
 
It is increasingly clear that pulmonary vascular pathology is integral to a number of childhood disorders. In this symposium, we will bring together international experts to explore our current understanding of the basic pathobiology as well as new and future therapies for neonatal, pediatric and adult pulmonary vascular disease. Visit www.cme.ucsf.edu or call 415-476-4251. Brochure (PDF)
 
Presented by: Department of Pediatrics
University of California, San Francisco
School of Medicine
 
This event is part of the Building Medical Education in PH program. To partner with PHA in promoting your next CME event please contact Jennifer Carman, PHA's Meetings Planning Associate, at 301-565-3004 x763 or BME@PHAssociation.org.
TAKE ADVANTAGE OF PHA'S FREE PLANNED GIVING
E-BROCHURES!

 
When you decide to create or update your estate plan, you'll need to talk with your attorney. But first, fill out our inventory and checklist, and review this questionnaire. It will save time and lead you to the options that meet the needs of your beneficiaries, protect your estate and keep your estate taxes as low as possible. Check out this brochure and many more free resources on PHA's Planned Giving website.

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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.