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

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

NTSAD leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases

08/21/2026

We’re taking a look back at past NTSAD conferences and the incredible moments that bring our community together.

From educational sessions and research updates to meaningful family connections, these gatherings remind us of the power of shared experiences and collective hope.

Do you have a favorite conference memory? Share it in the comments below. 💜

08/19/2026

After more than 15 years of searching for answers, Al Croft was diagnosed with Late Onset Tay-Sachs disease (LOTS) in 2015. Since then, he has faced ongoing challenges with remarkable resilience, finding strength through family, music, faith, and the NTSAD community.

Today, Al is sharing his story to raise awareness of LOTS and support NTSAD’s research and family services programs that make a difference for individuals and families affected by Tay-Sachs, Canavan, GM1, or Sandhoff diseases.

Learn more and support Al’s Day of Hope: https://ntsad.org/donate-campaigns/al-croft-day-of-hope/

08/18/2026

💜 Siblings play a unique and important role in the rare disease journey.

NTSAD’s new Sibling Guide was created to help parents and caregivers with providing support for healthy siblings, allowing them to better understand their loved one’s diagnosis, navigate emotions, and feel supported along the way.

Whether you’re looking for conversation starters, coping strategies, or guidance for supporting your family, this resource can help strengthen relationships and foster understanding.

Learn more about resources for supporting healthy siblings and access the Sibling Guide: https://ntsad.org/support-for-families/supporting-siblings/

08/15/2026

As back-to-school season approaches, many families are shopping for supplies, meeting teachers, and celebrating new milestones. For rare disease families, this time of year can look very different.

From navigating IEPs and homebound education to missing a child who never had the chance to attend school, parents in our community share the realities of supporting children affected by Tay-Sachs, Canavan, GM1, or Sandhoff diseases.

Read "Every Child’s Journey: The Reality of Rare Disease and Back-to-School" to learn more and find support resources for families navigating the season: https://ntsad.org/2026/08/12/rare-disease-and-back-to-school/

08/13/2026

This week, we’re highlighting Kristin and her Day of Hope fundraiser, “Team Merkel.” 💜

For 23 years, Kristin searched for answers to unexplained symptoms that impacted every aspect of her life. Today, Kristin is only aware of seven adults in the U.S. living with Late Onset Sandhoff disease. Through Team Merkel’s Day of Hope, Kristin is turning her journey into action by raising awareness and funds for critical research and family support for NTSAD’s rare disease community.

Read Kristin’s story, participate in her Day of Hope fundraiser, and help advance research and provide resources for the NTSAD community: https://ntsad.org/donate-campaigns/team-merkel-day-of-hope/

08/11/2026

At NTSAD, we’re committed to sharing research that can make a difference for our rare disease community.

A recent publication identified a Sandhoff disease variant (mutation) that may be more common in individuals of Greater Middle Eastern ancestry. Because standard genetic testing would miss this variant, this discovery could help improve diagnosis, inform future carrier screening, and expand our understanding of Sandhoff disease.

Learn more and access the article here: https://pubmed.ncbi.nlm.nih.gov/42271533/

08/10/2026

NTSAD is looking forward to bringing our community together in Fort Lauderdale for our upcoming Regional Family Meetup!

This special weekend will connect rare individuals and families from across South Florida for meaningful conversations, shared experiences, and support. Together, we’ll participate in the 16th Annual Day of Hope by taking part in our “Move a Mile” walk, enjoy dinner as a community, and gather for breakfast the following morning.

📅 September 19-20
📍 Ft. Lauderdale, FL

Learn more about NTSAD’s family support programs and how we serve our rare individuals and families year-round: https://ntsad.org/support-for-families/

08/07/2026

As September 19 approaches, individuals and families across our rare disease community are hosting awareness events, launching fundraisers, and finding unique ways to move hope forward.

Every event, fundraiser, and mile helps make a difference. Explore the growing list of Day of Hope activities and discover how our community is making an impact!

Here's a look at what's planned so far!

Visit our Day of Hope page to explore community events, get inspired, and learn how you can get involved: https://ntsad.org/events/day-of-hope/

08/05/2026

Mark your calendar for Saturday, September 19, and join NTSAD's 16th Annual Day of Hope. Complete one mile your way, whether that's walking, running, rolling, dancing, biking, or any movement that inspires you.

💜 Looking to make an even greater impact? Create a personal fundraising page with NTSAD and rally your friends, family, and colleagues to join you in supporting our rare disease community.

Your participation and fundraising efforts help drive research forward, advocate for the rare disease community, and provide meaningful support to individuals and families affected by Tay-Sachs, Canavan, GM1, or Sandhoff diseases.

Reach out to our Development & Communications Manager, Erin at [email protected] to get started today.

08/03/2026

For 48 years, the NTSAD Annual Family Conference has been a place where families facing a rare diagnosis of Tay-Sachs, Canavan, GM, or Sandhoff find connection, understanding, and hope. In our newest Rare Family Impact Story, three siblings, Samie Ponsor, Emma Ronaldson, and Esteban Roman, share what it was like to grow up returning to the conference year after year.

Now young adults, these three reflect on the unique experience of having a rare sibling, navigating loss at a young age, and finding comfort in a community that truly understood rare life first-hand.

Read Growing Up Rare: The Sibling Perspective here: https://ntsad.org/support-for-families/meet-our-families/

Your support helps to connect siblings of individuals affected by rare diseases with one another and fuel programs that offer valuable resources. Donate today and help every sibling know they are seen, heard, and never alone.

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

Website

http://www.NTSAD.org/

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