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


Having a brother or sister with Tay-Sachs, Sandhoff, GM1, Canavan or related disease can be hard, confusing and overwhelming. This section is just for you! It will help you understand the disease, connect with other siblings and learn about ways to play and interact with your affected brother or sister.

Special Siblings:
A Guide to Being a Brother or Sister to Someone Affected by a Genetic Disease

This booklet was written by a sibling, Rabbi Rebecca Ratner, whose sister, Ilana, had Canavan disease. A copy can be downloaded here or email Diana This email address is being protected from spambots. You need JavaScript enabled to view it. to have them mailed to you.

Rare Siblings Project
An Exploration of What It Means to Have a Sibling with a Life-limiting Illness


This project is for rare siblings, by siblings.

—Siblings share their experience to help other siblings.

It is also for parents, by parents.

—Parents share their perspective and experiences to help other parents who wonder and worry about the challenges of caring for all of their children while one child in particular requires more medical care.

It is also for medical providers who care for these families and wish to hear more about the family experience.

Kids Camp & Youth Retreat

The Annual Family Conference provides programs just for kids! Camp Sunshine is for healthy siblings under age 10. Play games, enjoy arts n crafts projects and connect with other siblings. The Youth Group is for healthy siblings 10 to 17 (or still in high school). In addition to sessions structured for this particular group of rare siblings, they get to go on fun and exciting field trips and enjoy just being a kid with other siblings that truly understand.

Gottlieb Sibling Scholarship

The Jeffrey Alan & Stanley Gottlieb Memorial Scholarships are awarded each year to outstanding siblings attending a four year college. The application process for the 2022-2023 year will be announced mid-2022. Visit the Gottlieb Sibling Scholarships page to read about the siblings awarded the 2021-2022 Gottlieb Sibling Scholarships! 



Featured Sibling

Carly’s big sister, Brooke, had Tay-Sachs. While Carly may not have memories of her sister, she and her brother, Alec, have honored her all too short life by volunteering for NTSAD and raising awareness. Last spring, Carly, organized a fundraiser in Florida at a local shop raising nearly $2,000 for NTSAD! She rallied her friends and family and made an impact! Thank you, Carly!

Guess what? We LOVE to highlight the amazing and rare siblings like Carly above! And we want you to send in something about you! It could be anything. What’s your favorite music? Do you play an instrument or a sport? Do you have a hobby that you’re passionate about? Do you want to share a review of your favorite book or movie? Or do you love to draw, paint or write poems? We’d love to hear from you. (Or moms, dads, grandparents...this is your chance to shine the spotlight on them, too!)

Please send to Diana by email here or mail to Diana’s attention at NTSAD, 2001 Beacon Street, Suite 204, Boston, MA 02135.