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
May 2025 Issue

Community Connections

In this Issue:

  • 47th Annual Family Conference
    April Recap
  • AFC Feedback Survey
  • Thank You AFC Sponsors
  • BridgeBio’s On Rare Podcast
  • Juvenile GM1, Sandhoff, and Tay-Sachs FDA Listening Session
  • Call to Action: Aqneursa Survey
  • Canavan Family Support Group
  • Mother’s Day
  • International Bereaved Mother’s Day
  • International GM1 Gangliosidosis Awareness Day
  • Mission Moment
 
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Tiny Hoofbeats, Big Impact

“Kensley Jo taught us strength and love. She was a fighter and a happy child.”

 

 

 

“We are happy to have you in our lives! You are the light and the smile of every day! We love you. Thank you for teaching us so much. Ciro te amamos.”

 

 

“Lily taught us that even through the hardest times there is so much to be grateful for. Her smile gets us through it all. She inspires me everyday to be the best I can be for her.”

 

 

Join Kensley, Ciro, and Lily’s families and our community and make a BIG impact to support families and individuals affected by rare disease with a donation of $28 or more this Rare Disease Month – February 2025.

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