About Us

Our Past... Our Purpose

National Tay-Sachs & 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. 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 more than 50 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 Challenges Ahead

• To develop carrier screening and prevention services for each of the allied diseases.
  
• To increase our outreach efforts to families of affected children.
  
• To expand our education and 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

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.

The Cameron & Hayden Lord Fund is a restricted fund within the NTSAD New York Area organization. It was established in memory of Cameron and Hayden Lord, cousins who lost their battles with Tay-Sachs Disease. The fund supports programs of the NTSAD Annual Family Conference.