Get Involved
Online Community
Follow Hope for SPTAN1 on Instagram: @hopeforsptan1
Join the SPTAN1 Facebook group.
This is a private group for those who have a family member with SPTAN1 or for adults living with an SPTAN1 mutation.
Follow Hope for SPTAN1 on Facebook
Family Support
Care 4 the Caregivers was created for caregivers, by caregivers who often feel isolated and overwhelmed. We connect like-minded individuals by providing them full access to all of our resources. They offer an informational space, an empowering environment, and programs and services that help families thrive.
Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness.
Offers numerous supports to all families, including peer to peer support and many workshops.
Services for children with disabilities by state.
American Association of Intellectual and Developmental Disabilities
HopeKids provides ongoing events, activities, and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. We surround these remarkable children and their families with the message that hope is a powerful medicine.