National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD) NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases

A meaningful step forward for the GM2 community!We're glad to share this update from our partners at Azafaros, newly pub...
06/18/2026

A meaningful step forward for the GM2 community!

We're glad to share this update from our partners at Azafaros, newly published Phase 2 data for nizubaglustat, demonstrating encouraging safety and evidence of reduced disease progression and seizure burden.

Read More: https://bit.ly/4oUrqHT

If you have questions about what this means for the NTSAD community, we're here for you. Feel free to reach out to [email protected] with any questions.

06/17/2026

This National Mascot Day we celebrate NTSAD's fur-ever friend, Gene who is always there to offer a smile and hug to our rare community!

Rare Across America 2026 is the opportunity to share your story with your Members of Congress virtually/at their in-dist...
06/15/2026

Rare Across America 2026 is the opportunity to share your story with your Members of Congress virtually/at their in-district offices and educate them on the issues that are most important to the rare community. Registration closes on July 17. Register now at https://bit.ly/4e5iElh.

When the Redfield families’ daughter Ava was diagnosed with Tay-Sachs disease, they knew they wanted to make as many mem...
06/11/2026

When the Redfield families’ daughter Ava was diagnosed with Tay-Sachs disease, they knew they wanted to make as many memories with her as possible in the short time they had. Living in Alaska, exploring the outdoors is a special experience for Ava’s family. Ava’s legacy lives on today in their nonprofit, Adventure for Ava where their mission is “Helping families with special needs capture memories”.

The Redfield’s were connected to the Worby family through NTSAD and were recently able to help them have an adventure of their own. The Worbys also live in Alaska and their daughter Hannah has Canavan Disease.

The Redfield family continues to spread awareness and advocate for and offer support to other rare families, in Ava’s memory. Learn more about Adventure for Ava at https://www.avasstory.org/.

For some children, this season brings celebrations and graduations. For families affected by Tay-Sachs, Canavan, GM1, or...
06/09/2026

For some children, this season brings celebrations and graduations. For families affected by Tay-Sachs, Canavan, GM1, or Sandhoff, the path looks different. Some children may learn in new ways, pause schooling for medical needs, or not return to the classroom at all. And for some families, this season carries the unimaginable weight of grief and remembrance.

We honor every step taken this year, the therapies, hospital stays, brave mornings, and quiet victories. To every family walking a different road: you belong here. Your path matters and you are not alone.

NTSAD community member and mom to Greyson, Kim Rudness, recently celebrated a major accomplishment in turning her pain i...
06/08/2026

NTSAD community member and mom to Greyson, Kim Rudness, recently celebrated a major accomplishment in turning her pain into purpose after losing Greyson to infantile Tay-Sachs disease, by earning her nursing degree this spring.

"I got to bring a lot of [Greyson] with me to the classes and share with other students and teachers about Tay-Sachs and rare diseases in general, and how to kind of navigate this tough topic of death -- especially a child's death," said Kim.

Kim’s story was recently shared on their local Fox 11 news channel. Read the full story and see the broadcast at https://bit.ly/4uNiHZQ.

Curious about NTSAD’s Day of Hope, but not sure how to participate? Any event, big or small, and every dollar raised hel...
06/05/2026

Curious about NTSAD’s Day of Hope, but not sure how to participate? Any event, big or small, and every dollar raised helps to spread awareness and push research forward, all while supporting vital family services for families and individuals affected by Tay-Sachs, Canavan, GM1, or Sandhoff disease.

You don’t have to wait for September 19, give to support the Day of Hope today at NTSAD.org!

Since the first Day of Hope held in September 2011, the NTSAD Community has raised more than $839,564 for research and v...
06/04/2026

Since the first Day of Hope held in September 2011, the NTSAD Community has raised more than $839,564 for research and vital family services for families coping with Tay-Sachs, Canavan, GM1, or Sandhoff disease, but we still have more work to do.

Join the 2026 Day of Hope effort by hosting an event, sharing your personalized giving link, or donating at NTSAD.org.

Advocacy in Action: Celebrating Chloe’s Closet. The Negron Family created Chloe’s Closet to provide durable medical equi...
06/03/2026

Advocacy in Action: Celebrating Chloe’s Closet. The Negron Family created Chloe’s Closet to provide durable medical equipment to children throughout Connecticut. Established in memory of their daughter, Chloe, who passed away in 2025 from Tay-Sachs disease, the program was inspired by her family’s experience navigating the challenges of obtaining and affording specialized medical equipment during a serious pediatric illness.

At NTSAD we recognize the often overwhelming challenges securing the right medical equipment can bring when facing a rare illness such as Tay-Sachs, Canavan, GM1, or Sandhoff. Did you know Benton’s Family Assistance Fund helps families within the NTSAD community cover the cost of shipping medical equipment throughout the USA?

Read more about Chloe’s Closet and Benton’s Family Assistance Fund at https://www.givct.org/chloescloset and https://ntsad.org/donate-campaigns/bentons-family-assistance-fund/.

Day of Hope is a collective effort! NTSAD’s annual day of awareness where rare families, friends, and supporters come to...
06/02/2026

Day of Hope is a collective effort! NTSAD’s annual day of awareness where rare families, friends, and supporters come together to host events and raise awareness and critical funds for research and family services. All summer long, families hold walks, runs, dance parties, pancake breakfasts, trivia nights, sports tournaments, Facebook fundraisers, t-shirt campaigns, and more in support of NTSAD families and individuals affected by Tay-Sachs, Canavan, GM1, or Sandhoff disease.

Learn more at https://ntsad.org/events/day-of-hope/.

Address

2001 Beacon Street, Ste 204
Boston, MA
02135

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+16172774463

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