Leading the Fight to treatand cure Tay-Sachs, Canavan and related diseases
National Tay-Sachs and Allied Diseases Association (NTSAD) was founded in 1957 by a small group of concerned parents with children affected by Tay-Sachs disease or a related genetic disorder including all the lysosomal storage diseases and leukodystrophies. Dedicated to the defeat of Tay-Sachs and the 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 two 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 five decades the organization has grown in size, scope and stature. NTSAD services now encompass over 100 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 the lives of children, adults and families.
Fueled by a partnership of dedicated volunteers, gifted professionals and a distinguished Scientific Advisory Committee, NTSAD programs of Research, Family Services, International Laboratory Quality Control, Carrier Screenings, Advocacy and Public and Professional Education, now serve a diverse and international constituency.
Nowhere is the impact of NTSAD more evident than in its unique Peer Support Group (PSG). The PSG, a Member Services program, links families and individuals affected by Tay-Sachs and allied diseases to a unique lifeline of information, resources and support. Services available to members of the PSG include a national telephone support network (US parents only) and directory, paper and electronic newsletters, a lending library, educational materials and an annual conference - all sponsored and funded through NTSAD and coordinated by special PSG volunteers who are themselves family members of affected children and individuals.Today, NTSAD is recognized as a leading non-profit, volunteer health organization with a demonstrated commitment to service, science and support. For further information on NTSAD, please call or write.
When children’s lives are at stakepatience is not a virtue!
While the tragedy of Tay-Sachs disease can now be prevented through wide-scale carrier screening and prenatal diagnosis, many people remain uninformed and have yet to be tested. A cure for Tay-Sachs continues to elude us; for the allied diseases, the answers are even slower in coming. The waiting is difficult.To meet this challenge, our goals are:
• To increase our outreach efforts to families of affected children,• to devote increased attention to research, where the ultimate solutions - cures for all the lysosomal storage diseases and leukodystrophies - lie hidden,• to expand our education and
carrier testing programs for the prevention of Tay-Sachs disease,• and to develop carrier screening and prevention services for each of the allied diseases.Please share our vision of a future when Tay-Sachs and the allied diseases no longer threaten children's lives. Your support today helps bring that tomorrow one day closer.For further information please contact us.
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