Where would you like to begin?
Simple explanations, genetics, and what we know so far
Therapies, equipment, school, routines, and real-life tips
Current research, clinical studies, and other interventions
Find community, share experiences, and feel less alone
New Diagnosis?
If you’re here, you’re probably trying to make sense of a new diagnosis. Start with the basics, then come back when you’re ready for more detail.
-
What to expect early on (COMING SOON!)
-
What we wish we knew early on (COMING SOON!)
-
Glossary of terms (COMING SOON!)
Understanding SPTAN1
Coming Soon!
Daily Life
Coming Soon!
Research & Treatments
Coming Soon!
Connect With Other Families
Nobody knows more about what it's like than those who've been in your shoes. Please don't hesitate to reach out.
Online Community
Family Support Organizations
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
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.
​
​