April 10, 2011
Familial Dysautonomia Awareness Day
Lawmakers raise awareness for
FD and the Dysautonomia Foundation.
A resolution designating April 10, 2011, as "Familial Dysautonomia Awareness Day" in Pennsylvania
was adopted unanimously by the Commonwealth's House of Representatives on April
The resolution was sponsored by Representatives Josh Shapiro (District 153)
and Thomas Caltagirone (District 127). The April 10th date was picked to
coincide with the first annual
Path to the Cure FD Bike/Walk Tour
held in Abington, PA.
Representative Shapiro, D-Montgomery, attended the event, where he
spoke to a crowd of nearly 350 participants and presented
the organizers with a copy of the resolution.
Rep. Shapiro is a leading voice for health-care
issues; he sponsored the resolution to help raise awareness for FD
and to spread the word for the importance of FD carrier screening.
In his remarks at the event, he emphasized the need to bring
attention to FD and praised the attendees
for their strong show of support.
Full text of the
Pennsylvania resolution is available
from the Pennsylvania House of Representatives web site. The
Pennsylvania Resolution marks only the second time a state has recognized the
importance of FD awareness. A similar
resolution was adopted by the New York
State Senate and Assembly in February.
The Dysautonomia Foundation is a 501(c)(3) nonprofit public charity
and is the world's leading supporter of medical treatment, research, public awareness
and social services for the benefit of people afflicted with FD.
The Foundation has established the world's only two FD treatment centers
and is the largest single source of funding for research and treatment
for the benefit of people with FD.
a video about
FD and the Dysautonomia Foundation's work.
Familial Dysautonomia (FD) is a rare genetic neurological condition that affects the
sensory and autonomic nervous systems, causing severe gastrointestinal, cardiac,
pulmonary, orthopedic, renal and vision problems.
FD was once considered a fatal disease, but the Foundation's efforts have resulted in
dramatic improvements in the quality of life and life expectancy for FD patients.
Still, people with FD must overcome tremendous challenges, including frequent
hospitalizations, major surgeries and daily medical and supportive therapies as
they try to live normal lives.
carrier screening video to learn how everyone can learn about
their risk for having a child with FD.
Representative Josh Shapiro from Pennsyvania's Montgomery County
sponsored the resolution in an effort to raise awareness for FD and
the need for carrier screening.