NTSAD History

National Tay-Sachs and 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, all the lysosomal storage diseases and leukodystrophies. 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 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 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 and Research and Family Services 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.

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.

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.

Over one million people have been screened and over two thousand healthy babies have been born as a result of Tay-Sachs carrier testing.
1881	Warren Tay, British ophthalmologist, describes first recorded case of Tay-Sachs disease.
1887	American neurologist Barnard Sachs describes neurology of Tay-Sachs Disease.
1942	Chemistry professor Ernst Klenk of Cologne describes accumulation of gangliosides in brain tissue of affected children.
1957	Founding of National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) by parents committed to the eradication of the Tay-Sachs disease and Sphingolipidoses.
1958	First International Symposium, funded by NTSAD and chaired by Dr. Bruno Volk, exclusively devoted to the cause and treatment of the Tay-Sachs disease and Sphingolipidoses.
1962	Lars Svennerholm, Biochemistry Professor at Gothenberg, identifies and characterizes ganglioside GM2 - a possible explanation for Tay-Sachs disease.
1969	Doctors Shintaro Okada and John O’Brien at University of California pinpoint the absence of Hexosaminidase A in Tay-Sachs children, lower than the normal level in parents.
1970	Dr. Michael Kaback, now of UCSD Medical Center in San Diego, conducts first mass public screening in Maryland to identify Tay-Sachs carriers, funded in part, by NTSAD. Tay-Sachs disease established as first genetic disease meeting the criteria for public prevention programs.
1975	First International Conference on Tay-Sachs Disease: Screening and Prevention held in Palm Springs, CA, funded by NTSAD and the National Foundation of the March of Dimes.
1976	First International Tay-Sachs Screening Workshop - Toronto, Canada, funded by NTSAD and the National Institutes of Health, U.S. Department of Health, Education and Welfare.
1981	NTSAD sponsors workshop session, Tay-Sachs Disease: Progress in Testing and New Approaches at the 32nd Annual Meeting of the American Society of Human Genetics held in Dallas, TX.
1983	Thomas Jefferson University School of Medicine, Philadelphia, PA; Michael Reese Hospital, Chicago; and the Mount Sinai School of Medicine, New York, NY use chorionic villi sampled from the placenta, in utero, to diagnose fetal Tay-Sachs disease in the first trimester of pregnancy.
1987	Centennial of Bernard Sach’s description of first American patients with Tay-Sachs disease observed by an International Scientific Conference in New York, where the first mutations in the gene causing Tay-Sachs disease were described.
1992	NTSAD sponsors first-ever conference for individuals and families affected by Late Onset Tay-Sachs disease -- a rare form of Tay-Sachs disease affecting adults.
1993	Dor Yeshorim, a unique Tay-Sachs carrier screening program serving the Orthodox Jewish community, founded by Rabbi Jospeh Eckstein and Dr. Robert Desnick of the Mt. Sinai School of Medicine in New York, observes one decade of service; more than 40,000 have been tested.
1995	The Home Care Book, a 35 page educational booklet on caring for children with a progressive neurological disease is published by NTSAD. The American College of Obstetricians and Gynecologists issued its first committee opinion statement (#162) regarding Tay-Sachs.
1996	NTSAD debuts on the World Wide Web!
1999	NTSAD hosted an educational symposium, “Genetic Disease in the Jewish Community: A Symposium for the Helping Professionals.”
2001	NTSAD rededicated itself to funding cutting-edge scientific and medical research and established the NTSAD Research Initiative.
2002	NTSAD marked its 45th anniversary year as the oldest genetic disease organization in the nation by bringing together leaders of genetic disease community for its First Summit of the Allied Diseases. The Research Initiative awarded its first research grants.
2003	Zavesca clinical trials for Late Onset Tay-Sachs disease continued with 30 participants at two study sites. This was the first ever potential therapeutic clinical trial for Tay-Sachs disease!
2004	The Second Summit of the Allied Disease: Technology for the Genetic Diseases of the Central Nervous System brought NTSAD’s philosophy of collaboration and inclusiveness to biotech pharmaceutical companies. 2004 also marked the start of the Zavesca trial in babies affected by Infantile Tay-Sachs.
2005	NTSAD partnered with the MPS Society to co-found the Lysosomal Storage Disease Research Consortium, which joined with the National Institute of Neurological Disease of NIH and Stroke for the purpose of a jointly sponsored program to provide financial, scientific and administrative support towards preclinical or translational research specifically addressing the neurological aspects of lysosomal storage disorders
2006	National Institute of Neurological Disease and Stroke and the Office of Rare Diseases of NIH, in collaboration with NTSAD hosted a workshop to bring together leading scientists working in the fields of basic and translational glycosphingolipid research with the primary goal to review recent developments in the field and to identify research priorities and resources that will lead to successful therapies for these devastating diseases.

History of NTSAD