National Tay-Sachs & Allied Diseases Association

The Power of Community

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.

More News
June 2025 Issue

 

NTSAD Community Connections

In this Issue:

  • NTSAD at ASGCT
  • Billion To One Prenatal Screening
  • Save the Date for Imagine & Believe
  • Take Action to Save Medicaid
  • Rare Across America
  • Fund Hope for Tomorrow
  • 2024 Rare Impact Report
  • GM1 and GM2 Juvenile Family Support Group
  • Father’s Day
  • Mission Moment
 
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What’s Ahead for NTSAD in 2025

June

  • End of the 2025 Fiscal Year
  • Development Manager: Open Position
  • Administrative Assistant: Open Position
  • Save the Date for Imagine & Believe on Thursday, November 6, 2025

July

  • Start of 2026 Fiscal Year
  • NTSAD Day of Hope Launches: Reach out to plan how you and your community can rally and raise awareness and funds for NTSAD Research and Family Support!

August

  • Patient-led Listening Session for Juvenile Onset GM1, Sandhoff, and Tay-Sachs in front of FDA takes place August 28, 2025

September

  • Tay-Sachs and Canavan Awareness Month
  • NTSAD’s 68th Anniversary since its incorporation in 1957
  • NTSAD Day of Hope on September 20th
  • NTSAD Regional Family Meetup September 20-21 in Irvine, California

October

  • NTSAD represented at NORD Breakthrough Summit in Washington, DC
  • Eighth Annual Late Onset Think Tank Meeting
  • RSVP for Imagine & Believe by October 30

November

  • Imagine & Believe on Thursday, November 6th at the Hyatt Regency Cambridge, 6-9pm

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