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.
A Guide to Being a Brother or Sister to Someone Affected by a Genetic Disease
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 2021-2022 year will be announced mid-2021.