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

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June 2024 Issue

Community News

In this Issue:

  • Late Onset GM2 Natural History Study
  • Myrtelle in FDA’s Pilot Program
  • Newborn Screening Assay for Canavan Disease
  • Conference Research Updates in Spanish
  • Thank You to Blyth Lord
  • Bridge Bio and the Americone Dream
  • Day of Hope 2024
  • NTSAD’s Research Initiative Summer Internship
  • Imagine & Believe and 47th Annual Family Conference
On February 15, the GM2 Community shared their experiences of living with Tay-Sachs and Sandhoff diseases during the first-ever, Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting with the FDA.

You can watch a recording of the GM2 EL-PFDD Meeting here.

Stay tuned for the summary of this first-ever meeting in the “Voice of the Patient” report in the late spring/early summer.

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