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

Join NTSAD for our upcoming educational webinar, Carrier Screening: What Families and Providers Need to Know, featuring ...
09/09/2026

Join NTSAD for our upcoming educational webinar, Carrier Screening: What Families and Providers Need to Know, featuring Staci Kallish, DO, Medical Geneticist at Penn Medicine.

Carrier screening can play an important role in family planning and may help individuals better understand their genetic risks before pregnancy.

Whether you’re a prospective parent, family member, healthcare provider, or advocate, this webinar will provide valuable information and practical guidance.

🗓️: Thursday, September 10

⏰: 12 PM ET / 11 AM CT / 9 AM PT

Special thanks to our webinar sponsors, Natera and BillionToOne, for their support of this educational program.

Register today: https://us02web.zoom.us/webinar/register/WN_XW2eHBj7RyKT-xbL3awBnw?_gl=1*1ahzt42*_gcl_au*MzEwNTE0MjgxLjE3ODIzMDk4NDU.*_ga*MTk2ODQwMzg1MS4xNzgyMzE3MDI1*_ga_L8TBF28DDX*czE3ODg5NzM5NTUkbzQ2JGcxJHQxNzg4OTczOTU5JGo1NiRsMCRoMA..

Cayden and Phillip shared something few people could understand. As two rare warriors living with Sandhoff disease, they...
09/09/2026

Cayden and Phillip shared something few people could understand. As two rare warriors living with Sandhoff disease, they faced extraordinary challenges, but their lives were defined by love, friendship, joy, and the people who cherished them.

Though their time was far too short, their impact continues to shine through the community that carries their legacy forward. This September, we’re honored to share Cayden and Phillip’s Day of Hope and the 3rd Annual Lemonade for a Cure Fundraiser, raising awareness for Sandhoff disease and funding for research and family services.

Every act of support helps ensure that rare disease families have access to community, resources, and hope while advancing research toward effective treatments and ultimately, cures.

Join us in honoring Cayden and Phillip by sharing their story and helping spread awareness during Tay-Sachs and Sandhoff Awareness Month.

Learn more and donate to Cayden and Phillip’s Day of Hope: https://ntsad.org/donate-campaigns/cayden-and-phillip/

Today, we recognize Labor Day and extend our gratitude to all those who work every day to strengthen our communities. W...
09/07/2026

Today, we recognize Labor Day and extend our gratitude to all those who work every day to strengthen our communities.

We are especially thankful for the volunteers, healthcare providers, researchers, advocates, and supporters who help advance NTSAD’s mission and ensure that individuals and families impacted by Tay-Sachs, Canavan, GM1 gangliosidosis, and Sandhoff disease never face their journey alone.

Wishing our community a safe and restful holiday.

What role can carrier screening play in helping individuals and families make informed reproductive health decisions? Jo...
09/04/2026

What role can carrier screening play in helping individuals and families make informed reproductive health decisions?

Join us on September 10 for Carrier Screening: What Families and Providers Need to Know, featuring Staci Kallish, DO, Medical Geneticist at Penn Medicine.

Dr. Kallish will share insights on the importance of carrier screening, how families and providers can work together to increase awareness, and practical resources to help support informed conversations about genetic risk and family planning.

Whether you’re a family member, advocate, healthcare provider, or simply interested in learning more, this webinar will provide valuable information and actionable guidance.

Register today: https://us02web.zoom.us/webinar/register/WN_XW2eHBj7RyKT-xbL3awBnw

During Tay-Sachs, Sandhoff, and Leukodystrophy Awareness Month, we’re also recognizing Carrier Screening and Newborn Scr...
09/02/2026

During Tay-Sachs, Sandhoff, and Leukodystrophy Awareness Month, we’re also recognizing Carrier Screening and Newborn Screening Awareness Month and the important role screening can play in rare disease awareness, prevention, and early diagnosis.

Carrier screening can help prospective parents understand their risk of passing on certain genetic conditions, while newborn screening helps identify some serious conditions as early as possible after birth. Education and awareness empower families to make informed decisions and access support when they need it most.

Learn more about carrier and newborn screening and genetic testing: https://ntsad.org/support-for-families/carrier-screening/

September is Tay-Sachs & Sandhoff Awareness Month and Leukodystrophy Awareness Month. This month, we join families, advo...
09/01/2026

September is Tay-Sachs & Sandhoff Awareness Month and Leukodystrophy Awareness Month.

This month, we join families, advocates, researchers, clinicians, and industry partners in raising awareness of Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

At NTSAD, we know that awareness goes beyond recognition. It fuels research, strengthens community, supports advocacy, and helps rare individuals and families find the resources and connections they need.

Together, we are advancing research, fostering community, and creating hope for the future.

Learn more about our mission: https://ntsad.org/

Back-to-school season is already underway, but the challenges many rare disease families face don’t end after the first ...
08/31/2026

Back-to-school season is already underway, but the challenges many rare disease families face don’t end after the first day.

From navigating educational plans and therapies to grieving milestones that may never come, every family’s journey is different.

If you missed it, read our latest Community Voices blog, Every Child’s Journey: The Reality of Rare Disease and Back-to-School, featuring reflections from families in our community.

Read the blog: https://ntsad.org/blog/

For more than two decades, the Manning family has transformed love, remembrance, and determination into meaningful actio...
08/27/2026

For more than two decades, the Manning family has transformed love, remembrance, and determination into meaningful action for the NTSAD community. đź’ś

In June, supporters gathered at the Applecross Country Club in Downingtown, PA, for the 23rd annual Drive FORE Dylan golf outing, an event established in honor of Dylan Manning and his legacy. This fundraiser began following Dylan’s diagnosis with Infantile Tay-Sachs disease and has grown into a powerful tradition of community, advocacy, and hope.

Over the past 20+ years, Drive FORE Dylan has raised nearly $500,000 to support NTSAD’s work to advance research and provide resources for families affected by Tay-Sachs and the other rare diseases NTSAD supports.

We are incredibly grateful to the Manning family, event sponsors, volunteers, golfers, and supporters whose dedication continues to make a lasting difference. Together, they are honoring Dylan’s memory while helping move us closer to a future with effective treatments and cures for Tay-Sachs, Canavan, GM1, and Sandhoff diseases. 💜

Visit our website to learn more: https://ntsad.org/donate-campaigns/drive-fore-dylan/

NTSAD’s Variant (Mutation) Database serves as a valuable resource for researchers, clinicians, and families by supportin...
08/25/2026

NTSAD’s Variant (Mutation) Database serves as a valuable resource for researchers, clinicians, and families by supporting a deeper understanding of genetic variants associated with Tay-Sachs, Canavan, GM1, and Sandhoff diseases.

Resources like this help strengthen collaboration, improve data sharing, and support ongoing efforts to accelerate research progress.

Learn more and access the Variant (Mutation) Database: https://ntsad.org/resources-for-professionals/variant-mutation-database/

Register for NTSAD’s upcoming educational webinar, Carrier Screening: What Families and Providers Need to Know, with fea...
08/24/2026

Register for NTSAD’s upcoming educational webinar, Carrier Screening: What Families and Providers Need to Know, with featured speaker, Staci Kallish, DO, a medical geneticist at UPenn Medicine. Learn how families, advocates, and healthcare providers can work together to increase awareness of carrier screening and help individuals make informed reproductive health decisions. Whether you’re sharing information with relatives or supporting patients in your practice, you’ll leave with resources and practical guidance to help move the conversation forward.

Register today to learn how families and healthcare providers can work together to increase awareness of carrier screening and empower informed decisions for future generations: https://us02web.zoom.us/webinar/register/WN_XW2eHBj7RyKT-xbL3awBnw

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