SCN8A Regional, Variant and Language
We are progressively developing networks of families, by geographic regions, and genetic variants and languages, around the world – coming together to learn about genetics and contribute to accelerating treatments for our children.
These groups are run by two SCN8A parents: Dr. Michael Hammer, father to Shay and discoverer of SCN8A as pathogenic for epilepsy in humans in 2012 and Gabrielle Conecker, mother to Elliott and Co-Founder of Wishes for Elliott.
The mission of our partnership is to bring families together with a wide range of stakeholders to better understand the genetics behind SCN8A and to collaborate towards finding a cure.
We meet in January, April, July, and October.
Join the Southeast group which includes Florida, Georgia, South Carolina, Alabama, Mississippi, and Tennessee!
Upper Midwest Group
Lower Midwest Group
West Coast US Group
MidEast Coast US Group
Fast Inactivation Group
Loss of Function Group
Part of our mission is to learn as much about SCN8A as we can. Among other things, we use these meetings to learn from you, as citizen scientists.
Much of what we discuss comes from what we’ve learned from the dedicated SCN8A Registry operated by Dr. Michael Hammer. The data from the registry is playing a critical role in helping bring new SCN8A targeted treatments to our children.
The more you share, the more we learn!