National Tay-sachs and allied diseases (ntsad)

Founded in 1957, National Tay-Sachs & Allied Diseases (NTSAD) is one of the oldest patient advocacy groups in the country. NTSAD's mission is to lead the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do. Each year NTSAD supports nearly 750 families by providing services, resources, and compassionate support to affected families.

  NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.

We will accomplish our mission by funding global cutting edge research, by helping to provide families with compassionate care and support and by collaborating effectively with the healthcare community to achieve our goals.The National Tay-Sachs & Allied Diseases Association will:· Direct, fund and promote research to develop treatments and cures· Provide comprehensive support services to affected families and individuals· Guide prevention, education, awareness and screening through effective grassroots collaborations with chapters and affiliates· Lead advocacy efforts as the recognized authority for this family of genetic diseasesThe related genetic diseases include over 50 lysosomal storage diseases and over 40 leukodystrophies. 

Tay-Sachs is a rare, genetic disorder caused by the absence of beta-hexosaminidase (HexA) causing various neurological symptoms, impacting speech and mobility. There are three forms of Tay-Sachs: Infantile, Juvenile, and Late Onset Tay-Sachs. It is most common in infants and older children, who experience the most severe forms and usually do not live past childhood. Late Onset Tay-Sachs is a progressive form that affects individuals slowly over time and is not fatal.  

 Currently, there are several promising research projects and clinical trials working toward effective treatments. Since 2002, NTSAD’s Research Initiative has made direct investments of more than $4 million in grants that have been leveraged to more than $30 million of investments in additional research, leading to new therapies.

 Anyone can be a carrier of Tay-Sachs. When both parents are carriers, each child has a 25% of having the disease. The carrier rate for the general population is 1/250. Some evidence suggests people of Irish / British Isle descent have an increased risk over the general population between 1/50 to 1/150. French Canadians, Louisiana Cajuns and Ashkenazi Jews are all considered high risk with a carrier rate of 1/27.