We are progressively developing networks of families —both regional and genetic—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 a cure.
We meet the Second Saturday of every month - 4pm EST (5pm on 3/13)
Join the Northeast group, which includes Ottowa and Québec.
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.
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!