Victories and Successes

Colleen Brunetti

Colleen Brunetti Testifies Before the FDA

PH patient and PHA Board Member Colleen Brunetti travelled to Washington, D.C., to speak to an Food and Drug Administration (FDA) panel, arguing for the inclusion of both PAH and organ transplant in the pilot year of the FDA's new initiative. The initiative will expand the way the FDA uses patient input during its review and approval of drugs and devices. Read more

Colleen Brunetti

I Secured a PH Research Act Co-Sponsor. You can, too!

PH patient and PHA Board of Trustees member Colleen Brunetti visited Washington, D.C., and talked to her Members of Congress about the Tom Lantos PH Research and Education Act. Her efforts helped secure another co-sponsor for the bill, Sen. Richard Blumenthal! Read more

Diane Ramirez and Susie Alvarez

Congressional Luncheon Reaches Legislators from Coast to Coast

December 2012 — PHA's annual Awareness Month Luncheon on Capitol Hill boasted the most diverse group of PHers and their loved ones ever. More than thirty PH community members from twelve states attended! Read more

Elsa Dasigo Receives Proclamation from Mayor of Honolulu

PHers Secure Record Busting 80 Proclamations During Awareness Month

December 2012 — PHers doubled their efforts to secure proclamations this year and it paid off! Eighty towns, cities and states declared November Pulmonary Hypertension Awareness Month — more than double the number of proclamations from Awareness Month 2011! Read more

Nicole cooperNicole Cooper

PHers Drum Up Support for PH Bill in Their Congressional Districts  

August 2012 — "People probably think, 'What difference can I make?' Listen, I'm one person. I've been in that congressional office and I've gotten a Member of Congress to co-sponsor after my meeting. If you get to one person, you make a difference," Nicole Cooper said about gaining co-sponsorship of the Tom Lantos PH Research and Education ActRead more 

Jeannette Morrill

PH Bill Gains New Co-Sponsors

July 2012 — Since the beginning of the year, six U.S. representatives have become co-sponsors of the Tom Lantos Pulmonary Hypertension Research and Education Act! Each new Member of Congress who adds his or her name to the PH bill represents a PH patient, caregiver or medical professional who contacted that Member and shared a story. Six Members signed on after receiving visits during PHA’s Congressional Luncheon in November, but some signed on after a simple phone call or email from a constituent. Learn more about keeping your Member of Congress aware of the PH community. Read more

Advocacy Letter Writing at the Conference Blogosphere

PH Community Builds Momentum for More PH Research and Education

June 2012 — PHers around the country joined PHA Conference attendees in an effort to make the most of our numbers. The goal was simple: to build support for the Tom Lantos Pulmonary Hypertension Research and Education Act by urging our Members of Congress to cosponsor the only PH-specific bill in Congress. Since the beginning of the year, PHers requested their Members of Congress cosponsor the PH Research and Education Act 1,280 times. Thanks to everyone for tirelessly advocating for a PH cure! Read more

Laura D’Anna, Immediate Past Chair of PHA’s Board of Directors, and her children Aidan and Olivia raise PH awareness on Capitol Hill

Laura D’Anna Spreads PH Awareness to Congress

April 2012 — In April, Laura D'Anna, Immediate Past Chair of PHA's Board of Directors, came to Washington, D.C., to raise PH awareness and ask her senators and representative to co-sponsor the Tom Lantos PH Research and Education Act of 2011. We asked Laura a few questions about her experience on Capitol Hill. Read more

Melanie Kozak

Congressional Staffers Inundated with Phone Calls for a Cure

April 2012 — PHers across the country called their Members of Congress during PHA National Call-In Day on April 26 to urge them to co-sponsor the Tom Lantos PH Research and Education Act of 2011. Thanks to everyone who called and made the day a resounding success! Read more

Michael McAdams, Rep Gillespie and Dr. Zubkus

Penn. State Rep. Keith Gillespie Puts Spotlight on PH

Penn. 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 for his 30 minute online legislative program. They talked about pulmonary hypertension, barriers to diagnosis, Michael’s personal journey with PH and his local support group. Over the last two years, Michael has actively advocated to State Rep. Gillespie about the need for more PH research and education. Michael asked him to declare November PH Awareness Month and last year hosted State Rep. Gillespie at a support group meeting. Watch Michael's interview with State Rep. Gillespie

Jeannette Morril and Rep Michael Michaud

PH Research and Education Act Gets a Wave of Congressional Support

January 2012 — Thanks to the hard work of several PH advocates, the following Members of Congress became official co-sponsors of the PH Research and Education Act in the new year: Read more

  

  

 

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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.