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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Our History

Founded in 1957

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.

60 Years of Expansion

For six 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.

Programs Today

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.

Strong Peer Support Group

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 stake
patience is not a virtue!

The Challenge Ahead

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
  • 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.

Historical Perspectives on NTSAD

2016 The first GM-1 Research Meeting was held at the 38th Annual Family Conference, which was held in Orlando and hosted 95 families from all over the world. NTSAD families contacted Senators around the country to encourage their support of the 21st Century Cures Act, which could accelerate the rate of discovery and development of treatments for many rare diseases.
2015 NTSAD held a Science Symposium & Workshop for Professionals in Reston, VA adjacent to the Annual Family Conference. The symposium and workshops gave 50 researchers and clinicians an opportunity to consider potential partnerships to make progress toward treatments. 3 out of 5 of NTSAD's annual research grant awards focused on clinical trial readiness.
2014 NTSAD's Board of Directors announced a five-year Strategic Plan for advancing research, supporting families, and promoting effective carrier screening. NTSAD formed the Corporate Advisory Council to partner more effectively with industry leaders. NTSAD Research Initiative grant awards surpassed $3 million since 2002.
2013 The film Parenting a Child with Life-Limiting Illness was launched. Production was made possible by a Patient Advocacy Leadership Award through Genzyme. Also, the FDA granted an NTSAD-sponsored Orphan Drug Designation for Tay-Sachs and Sandhoff gene therapy.
2012 NTSAD honored Henri Termeer in Cambridge, MA and Emil Kakkis, MD, PhD, in Newark, NJ at the 55th Anniversary galas.
2011 NTSAD hosted the Mechanisms and Interventions in Childhood Neurodegenerative Diseases. The scientific questions addressed included the role of inflammation in neurodegenerative diseases, methods available to penetrate the blood brain barrier and strategies of advancing potential therapies to clinical trials. NTSAD also hosted the first annual Day of Hope, a day on which families from all over the world host events to fund research.
2010 The Annual Family Conference in St. Petersburg, Florida included 78 families with affected children, 23 affected children, 57 healthy siblings and 13 families living with Late Onset Tay-Sachs!!
2009 The Tay-Sachs Gene Therapy Consortium received $3.5 MILLION in funding from NIH. The Research Initiative and its funding partners provided the framework to receive a high level of NIH funding NTSAD hosted New Topics in Lysosomal Storage Disease Therapies. Current and past NTSAD grantees discussed their new approaches to treating lysosomal storage diseases like Tay-Sachs and Sandhoff.
2008 September was declared National Tay-Sachs Awareness Month!
2007 NTSAD celebrated its 50th Anniversary with an incredible gala at the Tribeca Rooftop in New York City raising over $120,000! The Tay-Sachs Gene Therapy Consortium was formed with the ambitious goal of clinical trials in less than five years.
2006 National Institute of Neurological Disorders 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.
2005 NTSAD partnered with the MPS Society to co-found the Lysosomal Storage Disease Research Consortium, which joined with the National Institute of Neurological Disorders and Stroke of NIH 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
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.
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!
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. NTSAD rededicated itself to funding cutting-edge scientific and medical research and established the NTSAD Research Initiative.
1999 NTSAD hosted an educational symposium, Genetic Disease in the Jewish Community: A Symposium for the Helping Professionals.
1996 NTSAD debuts on the World Wide Web!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
1962 Lars Svennerholm, Biochemistry Professor at Gothenberg, identifies and characterizes ganglioside GM2 - a possible explanation for Tay-Sachs disease.
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.
1957 Founding of National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) by parents committed to the eradication of the Tay-Sachs disease and Sphingolipidoses.
1942 Chemistry professor Ernst Klenk of Cologne describes accumulation of gangliosides in brain tissue of affected children.
1887 American neurologist Barnard Sachs describes neurology of Tay-Sachs Disease.
1881 Warren Tay, British ophthalmologist, describes first recorded case of Tay-Sachs disease.

 

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