Welcome to the NTSAD website, which serves as resource for our community and a time capsule of decades of advocacy, research, and support for individuals and families affected by Tay-Sachs, Canavan, GM1, and Sandhoff diseases.
Whether this is your first visit to the NSTAD website, or you are a long-time member of our community—our mission unites us.
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.
I have been involved with NTSAD since I was young. I attended my first NTSAD Family Conference in 1995, when I was in high school and the conference was held in Philadelphia, my hometown. My family’s experience with a genetic disease both fascinated and inspired me. It is the reason why I’m a medical geneticist today. Since then, I’ve attended most of the annual family conferences.
Twenty years ago, I joined the Board, to give back to the organization that gave so much to my family, to offer my expertise, and to share my experience. I am grateful to have so many families open their hearts and share their experience with me as well.
The last year has been challenging for us all, but there were incredible advances in research, particularly for the NTSAD Community. For the first time, there are several clinical trials evaluating potential effective treatments. We look forward to sharing updates with you and expanding our research focus. We encourage you to sign up for our newsletter as well as following us on social media. We invite you to attend and support our Annual Family Conference and Imagine & Believe event. But most of all, we hope you join our Community and our efforts to support families.