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 patients, parents, and direct caregivers of those with SCN8A mutations. We know of approximately ~550 cases that exist in the world and we have personally connected with over 450 that are active in the support group. Our group represents 38 US states, and internationally represents 38 Countries.
Due to the strong privacy settings on the group page, we can only add people who first become Facebook friends of the administrator and fellow SCN8A parent, Shelley Frappier. There are also a few different SCN8A groups on Facebook. TCSF's group is called "SCN8A Families Support Group" and will not show in a Facebook search until you have been added to the group.
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.