History

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.

Better than telling how far we’ve come, we can show you our progress in our 65th Anniversary video.

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.

Since 2018, we’ve seen new clinical trials open for Tay-Sachs, Canavan, GM1, and Sandhoff diseases, and expect more will open in the years to come. We recently welcomed our first Research Director to lead the way in this exciting new era of clinical trials and expand our research focus to include earlier diagnosis and newborn screening.

We’ve also boosted our ability to help individuals and families interpret the latest research, find out what clinical trials might be available to them, and understand the process to participate in studies and clinical trials. If you’re looking for more information on clinical trials, please visit our Clinical Trials page.

Thanks to every single person, foundation, and company who have contributed to NTSAD. Donors like you make it possible for us to support individuals and families affected by rare disease and fund innovative research leading to potential treatments and a cure.

If you’d like to support our family services and vital research, please visit our Donate page. Thank you for making a real difference to Our Community today – and for future generations.