FD News
February 2011
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 New York State Proclaims
February 28, 2011
Familial Dysautonomia Awareness Day

Lawmakers in Albany raise awareness for
FD and the Dysautonomia Foundation.

New York lawmakers helped raise awareness for genetic testing and medical treatment of a rare Jewish genetic disorder called familial dysautonomia (FD) by designating February 28, 2011 as "Familial Dysautonomia Awareness Day."

New York has the highest concentration of FD patients in the country, and the US's only FD treatment center is located in New York City.

With only 350 people living with FD in the world, this life-threatening disease is often considered the "orphan of orphan diseases," but the New York State Assembly and Senate are giving FD special recognition in order to help raise public awareness of this devastating disease.

New York State formally recognized the importance of FD awareness by passing a "Familial Dysautonomia Awareness Day" resolution, recognizing the work of the Dysautonomia Foundation and stressing the need for genetic screening and enhanced support for FD treatment and research.

This special day for FD would not be possible without the remarkable efforts of the sponsors of the resolution, Assemblywoman Linda B. Rosenthal, from Manhattan’s Upper West Side, and Senator Toby Ann Stavisky, from Queens.

"This is an important opportunity," according to David Brenner, executive director of the Dysautonomia Foundation, "because most people who are at risk for having a child with FD are not aware that they can obtain genetic screening for FD and other Jewish genetic diseases. We are grateful to Assemblywoman Rosenthal and State Senator Stavisky for their support and for their efforts to help people who suffer from, or are at risk for, familial dysautonomia."

Click here for photos from the day in Albany and for the text of the resolution.

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. Watch 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. Watch a carrier screening video to learn how everyone can learn about their risk for having a child with FD.

      

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Assemblymember
Linda B. Rosenthal from Manhattan's Upper West Side (District 67) is the Assembly
sponsor of the resolution.
 

State Senator
Toby Ann Stavisky 
from Queens' (District 16)
is the Senate sponsor of the resolution.