About the Nonprofit
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National Tay-Sachs & Allied Diseases Association (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.
In 1957, National Tay-Sachs & Allied Diseases Association (NTSAD) was founded by three families – the Sussmans, Dunkells, and Berkmans – whose children were affected by Tay-Sachs disease. They were told there was no hope, but they gathered anyway in a living room in Brooklyn. This is where they began the fight for their children and every child, and to support one another. They spread awareness and raised money for research, launching NTSAD – one of the oldest patient advocacy organizations in the United States.
It’s incredible how far we have come. Raising awareness and prevention efforts, testing and carrier screening, family services, annual conferences, and family meet-ups. From natural history studies and animal models to geneOften referred to as the "unit of heredity." A gene is composed of a sequence of DNA required to produce a functional protein. More therapy, we’ve made great strides of progress.
Today, we provide more than 750 individuals and families with connection, resources, and individual support – constantly evolving to meet changing needs of families and shifts in research and industry.
Since 2018, our Family Services efforts have grown as we continue to connect families, host our Annual Family Conference, and offer specialized programming to help individuals and families affected by rare disease.