Diseases

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.

Research

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

Events

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.

March 2026 Issue

NTSAD Community Connections

In this Issue:

  • New Off-label Drug Documents
  • Researchers/Professionals Section of Our Website: Refreshed!
  • NTSAD Attends the 2026 WORLDSymposium
  • Published Data: AAV9 Gene Therapy in Type II GM1 Gangliosidosis – A Phase I/II Trial
  • Congress Passes Five-Year Reauthorization of Rare Pediatric Disease PRV Program
  • Know Your Heritage, Know Your Carrier Status
  • Interested in Fundraising?
  • Annual Family Conference Sponsorship Opportunities
  • Join the 70th Anniversary Campaign Focus Group!
  • Annual Family Conference: Register and Reserve Your Hotel Room Today!
  • 2026 Annual Family Conference Sessions: Schedule Overview
  • Join the All-Conference Zoom on March 25
  • Accepting Nominations for Power of One and Above and Beyond
  • Mission Moment
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What’s Ahead for NTSAD in 2026

March

  • Late Onset Supporting the Supporters Zoom Chat March 12 (second Thursday of each month)
  • St. Patrick’s Day
  • Late Onset Zoom Chat March 23 (last Monday of each month)

  • All-Conference Zoom March 25

April

  • Passover April 1-9
  • Easter April 5
  • Late Onset Supporting the Supporters Zoom Chat April 9 (second Thursday of each month)
  • NO Late Onset Zoom Chat in April
  • Annual Family Conference April 30 – May 3

May

  • Bereaved Mother’s Day
  • Mother’s Day
  • Late Onset Supporting the Supporters Zoom Chat May 14 (second Thursday of each month)
  • Memorial Day May 25
  • Late Onset Zoom Chat in May 27 (last Monday of each month)

Join the NTSAD Team!

At NTSAD, we are dedicated to supporting families and advancing research. Join us in making a meaningful impact in the lives of people affected by Tay-Sachs, Canavan, GM1 and Sandhoff diseases.

Current Opportunities:

Administrative Assistant

Director of Development*

(*Previous experience required.)

For more information and to apply, please send a cover letter with salary requirements to jobs@ntsad.org.

**Apply today and become a part of the NTSAD family!**

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