Congressional Luncheon 2006
By Katie Kroner
PHA
Advocacy and Awareness Manager
(from Pathlight Winter '07)
PHA President Rino Aldrighetti with
Congressman Tom Lantos' wife |
When PHA held its first annual Congressional Luncheon in November 2004, the PH Research Act of 2003 (H.R. 1316) and its companion bill (S. 2922), were small sparks of hope on the horizon of PH advocacy. They had passionate sponsors, and a few dedicated co-sponsors, but for the most part, pulmonary hypertension was invisible to Members of Congress.
All of that has changed. Many of the 105 patients and supporters who gathered at PHA’s Third Annual Congressional Luncheon on November 15 were PH advocacy veterans. Along with patients and supporters around the country, they have been educating their elected leaders over the years about the PH Research Act. They have called and written; they have scheduled local district visits and attended town hall meetings; and they have been successful. Annette Lantos — whose husband pioneered the PH Research Act — said that although she has been to many luncheons similar to PHA’s, she has seldom seen one so well attended. The outstanding attendance and wonderful energy of this year’s event were a direct result of the PH community’s calls and e-mails to their Members of Congress, efforts that have been, and continue to be, successful year after year.
Congressman Kevin Brady |
Since that first Congressional Luncheon in 2004, the PH Research Act (now H.R. 3005 and S. 1774) has come to have 260 co-sponsors in the two houses of Congress. In addition, it is expected that the National Institutes of Health will move forward with funding for two research centers dedicated to pulmonary hypertension early in 2007. In the halls of Congress, and in many federal agencies, PH is no longer invisible. This year’s luncheon provided an opportunity to say “thank you!” to supporters of the PH Research Act and to continue to build congressional recognition of pulmonary hypertension.
PHA Immediate Past Board Chair
and father to a PH patient
Jack Stibbs
|
Congressman Kevin Brady, sponsor of the PH Research Act, kicked off this year’s luncheon program with the story of his personal connection with PH. He reviewed highlights of the attention that pulmonary hypertension has been getting in the federal government and encouraged participants to continue advocating for a cure. Liberty Tilleman-Dick, granddaughter of Congressman Tom Lantos, spoke eloquently about her relationship with her sister, Charity, who is a PH patient, and the impact of PH on a community that is much broader than just its patients. Jack Stibbs, PHA board member and father of a PH patient, highlighted the growth of the PH community and left participants with a renewed sense of hope for the future.
To find out how you can get involved in advocacy efforts during 2007, talk to Katie at 301-565-3004 x109 or e-mail advocacy@PHAssociation.org.
