The International SCN8A Alliance is working globally to support families and advance better treatments for our loved ones.
Your support helps us do critical work such as:
– Hosting weekly meetings with the geneticist who discovered SCN8A, Dr. Michael Hammer, to help families better understand the genetics behind SCN8A, what we are learning from our Registry and help families navigate life with SCN8A.
– Coordinating the first process to develop diagnosis and treatment guidelines for SCN8A. Right now, our children are worse off than guinea pigs in an experiment. In controlled experiments, at least we learn what works and what doesn’t. There is no consistent documentation about what works for our loved ones with SCN8A and we are working to change that. We are partnering with 30 of the top pediatric epileptologists and families from around the world to build consensus on what we know about SCN8A and what we need to study further.
– Developing educational materials and hosting community sessions to help families gain access to academic research into SCN8A and better understand emerging issues for our community.
– Fund critical research to help us better understand SCN8A mutations and disorders.
And so much more.