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 gene therapy, we’ve made great strides of progress.