National Tay-Sachs & Allied Diseases Association

The Power of Community


Get reliable and accurate information about Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

Family Support

Connect with our Family Services Team who will answer your questions and share resources to help you navigate a diagnosis.


Learn about ongoing studies, clinical trials, funding opportunities, and research initiatives, and browse our research library.


Attend and support events that bring our Community together and raise awareness and critical funds.

NTSAD News & Events

Read the Latest News and Subscribe to our Community Newsletter.

July 2023 Issue

Community News

In this Issue:

  • Azafaros GM2 Clinical Trial
  • New Directory of Patient Samples
  • Working for Noa: Canavan Gene Therapy
  • Join Us in a Day of Hope
  • The Manning Family: 20 Years of Honoring Dylan
  • Stephanie Wright: Living with Late Onset Disease
  • Why I Give to The Buryk Research Fund
  • Imagine & Believe 2023
  • Gottlieb Scholarship for Rare Siblings  

Join us as for NTSAD’s signature event Imagine & Believe, November 9, 2023, 6 to 9 p.m. ET at the Royal Sonesta Boston.

Sponsorship opportunities are available. Tickets are $200. Donations and tribute ads are welcome.

On Thursday, November 10, 2022, the NTSAD Community will gather at the Royal Sonesta in Boston for the first in-person Imagine & Believe event in three years to commemorate NTSAD’s 65th Anniversary.

We Care for Rare

Jessie Jackson
Juvenile GM1 Disease

“Jessie (age 30) loves going on adventures! Like going to Nitro Harley Racing. She is not about to let GM1 keep her from LIVING life!”

Merlie Jackson, Jessie’s Mom