On
June 21, Congressmen Lantos and Brady held a press conference
to publicize the reintroduction of the PH Research Act. The PH
Research Act is crucial because it will fund ground breaking medical
research dedicated to finding treatments and possibly a cure for
PH. In addition to the two Congressmen, other speakers included
PHA board member Carl Hicks, PH patient Charity Tillemann-Dick
and Michael Hart, the father of a young PH patient.
Congressmen Lantos and Brady opened the event with brief speeches
about the importance of the PH Research Act. "While we've made
significant progress on combating PH's devastating affects on
young women, there is still much more to be done," Congressman
Brady boldly declared. "This funding will help bring us closer
to finding a cure and saving lives." Congressman Lantos announced
that bi-partisan support for the PH community was developing around
this bill - last year it had 26 co-sponsors. Congressman Lantos
also emphasized the importance of raising awareness about the
disease. "One of the great tragedies of PH is that it often goes
undiagnosed. Our legislation will help raise awareness of the
disease and its symptoms, speeding treatment to those who need
it."
After the first two speeches, all the PH patients in the room
joined PHA Board Member Carl Hicks at the podium in an overwhelming
show of support. Mr. Hicks spoke about his daughter, Meaghan,
who was diagnosed with PH eleven years ago. His touching presentation
moved the audience as well as the two congressmen present. Later,
as Michael Hart spoke, his 8 year old daughter, Hydeia, stole
the hearts of the crowd as she demonstrated how young, vibrant
patients are living with this disease everyday. Charity Sunshine
Tillemann-Dick, a granddaughter of Congressman Lantos, capped
off the morning with an emotional plea. She emphasized that there
are thousands of people like her who are currently living off
of hope; however, hope only lasts so long before a concrete treatment
or cure is needed.
The PH
Research Act will help convert hope into something more concrete.
The legislation authorizes $250 million over five years to fund
PH research and fulfill three key objectives. First, it expands
PH research at the National Heart, Lung and Blood Institute, which
is one of the top government research organizations for heart
and lung diseases. Second, it establishes several "Centers of
Excellence" which will focus on PH research and education efforts
for both health professionals and the general public. Finally,
it establishes a data system and clearinghouse at the National
Heart, Lung and Blood Institute.
This press conference was an important beginning for this legislation.
You can help in getting the PH Research Act passed. Join others
in the PH community and ask for your elected officials' support.
Check out PHAction for a helpful
guide on how to get involved.
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Founded in 1990, The Pulmonary Hypertension
Association (PHA) is a nonprofit membership organization that
provides a community of hope, support and education for patients
and families affected by PH. Today, there are almost 5,000 members
benefiting from PHA’s numerous services, including a patient-to-patient
telephone helpline, support groups, newsletters and conferences.
Congressman Lantos looks on as Carl Hicks addresses the audience.
PH patients show their support for the PH Research Act. From
left to right: Charity Tillemann-Dick, Hydeia Hart, Michael
Hart, Heather Koczur, Emily Pugsley, Conchita Watson, John Kostur.
Michael Hart takes center stage to speak about his daughter's
experience with PH.
Charity addresses the crowd as Representatives Brady and Lantos
look on.
Annette Lantos and Carl Hicks pose for a picture
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