|
About Us
Our Past... Our Purpose
National Tay-Sachs & Allied Diseases Association
(NTSAD) was founded in 1956 by a small group of concerned parents
with children affected by Tay-Sachs disease or a related genetic disorder.
Dedicated to the defeat of Tay-Sachs and several allied diseases, NTSAD
was an early pioneer in the development of community education about Tay-Sachs
disease, carrier screening programs, and laboratory quality control programs
— thereby ensuring that those being tested received accurate and
reliable information and test results. Today, more than one million people
have been tested for the Tay-Sachs gene, thousands of Tay-Sachs carriers
identified and hundreds of healthy children born to high-risk couples.
Over the past four decades, the organization has grown in size, scope
and stature. NTSAD services now encompass 48 genetic diagnoses and, as
science yields discoveries in the arena of the allied diseases, NTSAD
is committed to a leadership role in the application of this knowledge
to the betterment of children, adults and families. Fueled by a partnership
of dedicated volunteers, gifted professionals, and a distinguished Scientific
Advisory Committee, NTSAD programs of Public and Professional Education,
International Laboratory Quality Control, Carrier Screenings, Advocacy,
Research and Referral Services now serve a diverse constituency. Today,
NTSAD is recognized as a leading non-profit, voluntary health organization
with a demonstrated commitment to service, science and support.
The Evan Lee Ungerleider Foundation (ELUF)
is a restricted fund in the NTSAD New York Area organization. The foundation
was established by Shari and Jeff Ungerleider in honor of their son Evan
who was afflicted with Tay-Sachs Disease. Tay-Sachs Disease took Evan’s
life at the tender age of four. Throughout his life and in his memory,
the foundation’s goal is to raise money for research, education,
carrier testing, and family support services. It is hoped these efforts
will help prevent the tragedy of Tay-Sachs and allied genetic diseases
in other families.
The Harry Hoffman Fund is a restricted
fund within the NTSAD New York Area organization. It was established by
Sharon and Steven Hoffman in memory of their son, Harry, who was lost
his battle with Tay-Sachs Disease before his third birthday. Harry battled
the consequences of his condition every day. The fund is dedicated to
ensuring that someday all children will be born healthy and can grow and
play in a world free of genetic disease. The fund supports research, education,
prevention and family support services for Tay-Sachs and the allied diseases.
- To develop carrier screening and prevention services
for each of the allied diseases.
- To increasse our outreach efforts to families of
affected children.
- To expand our educationand carrier testing programs
for the prevention of Tay-Sachs, Canavan and the allied diseases.
- To devote increased attention to research, where
the ultimate solutions lie hidden.
|