Congressional Luncheon Builds Awareness, Legislative Support

I found out that I am one of only a few 30-plus-year survivors of PH … I have been to the very rock bottom with this disease and I know the despair, sorrow and destruction associated with everything patients deal with trying to live with PH. I have been fortunate enough to know the other side as well, the side that gives hope to continue the battle against PH.
~Jeannette Morrill shared her story at PHA’s Congressional Luncheon

Jeannette Morrill’s Congressman, Mike Michaud (D-ME), agreed to co-sponsor the Tom Lantos PH Research and Education Act after Jeannette and her lobby group met with him during PHA’s Congressional Luncheon and Advocacy Day.Each November, PHA hosts a luncheon in Washington, D.C., that brings PH patients, their families and their medical professionals together with Members of Congress and legislative staff. The goal: to help our elected officials understand pulmonary hypertension and keep the PH community in mind when they make policy decisions.

PHers from across the country worked to make this year’s event a success by participating directly or inviting their Members of Congress to attend. Thanks to your calls and emails, nearly 100 people, representing more than 25 congressional offices, attended the luncheon.

Powerful presentations from PH patient Jeannette Morrill, PH-treating physician Dr. John Berger, Congresswoman Lois Capps, Congressman Kevin Brady and Sara Mabry from Sen. Bob Casey’s office, inspired many in the audience to get involved in the fight against PH. After lunch, PH community members reinforced the message by visiting their representatives’ offices. Within a week, four congressional offices had contacted PHA to let us know that they plan to co-sponsor the Tom Lantos PH Research and Education Act.

By Katie Kroner, Director of Advocacy and Awareness

 

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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.