PHA News
In This Issue
Awareness Month e-Learning Event
Apply Now for a $5,000 PH Community Services Grant
September Events Bring Us Closer to a Cure
Living Outside the U.S.? Share Your Conference Suggestions!
Add Your Voice to the National Network Advocating for PH Research
PH in the News
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Upcoming Events
CAPHS Third Annual Let's Walk & Roll Event
September 19, 2009

Third Annual Maine "Swinging for a Cure" Golf Tournament and PH Forum
September 19, 2009
2009 N.C. Cure PH Golf Tournament, Raffle and Silent Auction
September 26, 2009
Pulmonary Hypertension Symposium: Patient Education
October 2, 2009

Fifth Annual N.Y. Funwalk for PH
October 3, 2009
Vol 10/Number 19 September 18, 2009
PHA logoPHANews Editor - Sally Maddox
Contributing Editors - PHA staff
Reaching over 6,500 subscribers
Awareness Month ice skatere-Learning Event
Empowered by Hope: Getting Involved During PH Awareness Month 2009
Wednesday, Sept. 30
2 p.m. ET
Webinar - phone AND web login 
Awareness Month, coming this November, is a time when the PH community is at its very best. If you want to participate but aren't sure how, this e-Learning Event can help you join the growing number of PHers who advance our cause every year.
You'll hear from PHA staff on how to get involved with fundraising, special events, advocacy and raising awareness through the media. If you've never been involved with Awareness Month before, this is a great way to get started! 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.

Tom Lantos speaking at the 2007 PH Resource Network Symposium Advocacy Day on Capitol HillThe Tom Lantos Innovation in Community Service Awards, sponsored by Gilead Sciences, will award up to ten $5,000 grants to recognize and further develop the PH community's volunteer efforts. The grant is designed to support the development of best practices and new ideas to advance the PH community's effectiveness:
  • Researching and developing innovative ways to raise awareness and foster community services in PAH
  • Extending  the reach of an existing innovative program in PAH community services
  • Reproducing an existing PAH community service program in another geographical region to address unmet needs
It is not designed to fund direct services such as transportation to medical centers or financial support to meet any individual needs.
Applications must be submitted by November 30, 2009. PHA members and all PH community volunteers can apply online or contact Greg Gershuny at or 301-565-3004 x758.
Melissa & Lauren Johnson at their Painting a Stroke event last year
It is only because of the time, talent and generosity of the organizers, sponsors, donors and participants for each special event that we can proudly say: PHA's Special Events program unites communities and drives us closer to a PH cure. They tirelessly raise awareness, support essential programs for patients, families and caregivers, and support peer-reviewed medical research.

That is why beginning with this issue we are starting a monthly feature acknowledging special events from the past month. The following September events deserve our heartfelt "Thanks!" for the incredible impact they've made.

  • 2nd Annual Painting a Stroke of PHenomenal Hope - Edmond, Okla.
  • Inaugural Pulmonary Pints: Pubcrawl for PH - Baltimore, Md.
  • 3rd Annual Maine Swinging for a Cure Golf Tournament and PH Forum - North Yarmouth, Maine
  • CAPHS 3rd Annual "Let's Walk and Roll" - Akron, Ohio
  • Inaugural Tee PHor Two Golf Tournament - Muscatine, Iowa
  • 2009 North Carolina Cure PH Golf Tournament - Mocksville, N.C.
With Awareness Month around the corner, maybe you're thinking about hosting an event but aren't sure where to start. PHA is here to support your efforts! Visit our online planning guide or contact PHA's Special Events Manager Jessica McKearin at to get started.
Join us in planning our 9th International PH Conference and Scientific Sessions! If you are a PH patient, medical professional, caregiver or association leader outside the U.S., please give us your ideas and feedback so we can create the most valuable experience possible for you.

This Conference, slated for June 2010, will feature all of the crucial education and networking opportunities of past Conferences:
  • Sessions on living and coping with PH
  • The latest on research and clinical best practices
  • Peer-to-peer training and new educational opportunities for leaders
  • Sessions en Español
  • And much more!

More than 1,150 PH community members are expected to attend the Conference, and we hope you will join us. 

Contact Christine at or +1-240-485-0760 with any suggestions or concerns.


435 Campaign LogoIn a few days, more than 100 allied health professionals will spread the word on Capitol Hill about the need for PH research and awareness. Each advocate will only visit a few offices, but together they will visit nearly 80 members of Congress and congressional staffers to request co-sponsorship of the Tom Lantos PH Research and Education Act of 2009.

Lobby DayThis is the PH community's grassroots advocacy network at its best. When you become part of this network, the 435 Campaign, you only need to contact your Members of Congress, but your e-mails and phone calls become part of a nationwide call for PH research. 

Join the 435 Campaign and begin receiving the tools and updates you need to make an impact by contacting Katie at or 301-565-3004 x749.
PH in the NewsPH IN THE NEWS
Waiting for Transplant an Emotional Roller Coaster
(Orlando Sentinel) - Tammy Jo Alford has had a bit of layover on the trip of her life. Alford, 36, left her Paisley home last October with her husband, Harold, and parents. She was to spend five days at the University of Pittsburgh Medical Center to be evaluated for a double-lung and heart transplant. Her ultimate goal was to make the "list." Read article
Endothelin Drugs Benefit Those with Pulmonary Hypertension
(ScienceDaily) - Recent research to block the effects of endothelin, a powerful substance that constricts blood vessels and stimulates cell growth, has led to successful treatment of pulmonary arterial hypertension and provides hope for treating other chronic diseases. Read article
The Grateful Groom

( Smithville, Canada - The gift was anonymous, rare and incredibly generous. And it gave him a decade worth of celebrating. Without it, he would be long dead. His life would have ended around the age of 14 from primary pulmonary hypertension -- a rare blood vessel disorder of the lungs that puts so much stress on the heart it eventually fails. Read article


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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.