We're sorry about your family member’s diagnosis, but we're glad you found us!
You've come to the right place. The SCN8A community has a private Facebook support group created by a parent, Juliann Bradish Pharm D., that is made up of only parents and direct caregivers of those with SCN8A mutations. We know of approximately 400 cases that exist in the world and we have personally connected with over 280 that are active in the support group. Our group represents 38 US states, and internationally represents 38 Countries.
We would love to have you added to our group, but due to the strong privacy settings on the page we can only add people who are Facebook friends of the administrator, and fellow SCN8A parent, Shelley Frappier.
The information collected by The Cute Syndrome Foundation will not be sold or distributed outside of TCSF and is used solely to verify the identity of and communicate with SCN8A Families Support Group members as needed. TCSF SCN8A Families Support Group is open to any parent or legal guardian who is interested in learning more about SCN8A Epilepsy and supporting our community of families.