The Cute Syndrome Foundation
The Cute Syndrome Foundation raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports the families around the world who are affected by these disorders. The Cute Syndrome Foundation is the starting point for support for newly diagnosed families and is 100% volunteer-run all by SCN8A parents! We help clinicians standardize treatment for individuals with SCN8A. We continue to work individually as well as in collaboration with other foundations to expand scientific knowledge of rare genetic mutations associated with pediatric epilepsy, and we remain the mainstay foundation to increase public knowledge of SCN8A mutations as well as rare genetic mutations and pediatric epilepsies. We also have a history of funding PCDH19 Epilepsy research.
The Cute Syndrome Foundation hosts The SCN8A Family Support Group on Facebook, which currently represents over 100 children with SCN8A mutations from more than 20 countries. This warm and supportive group is private, being made up of only parents or guardians of those with SCN8A mutations. The support group has offered its members treatment guidance, personal advice on therapies, devices, the educational system, and countless other topics. Many of the members identify with the others as family, and offer one another comfort and hope for a better future for all of their children. If you are interested in joining this wonderful group of families, please email the support group moderators: firstname.lastname@example.org