Thank you for your generous support for the work we do at the International SCN8A Alliance! We are working tirelessly and with urgency to find better treatments, care and outcomes for those living with SCN8A and their families. Your donation will go directly to helping us in our many global collaborations to ensure the best possible care for those with SCN8A including:
– Development of the first diagnosis and treatment guidelines for SCN8A in collaboration with 30 pediatric epileptologists representing 5 continents and a diverse group of families from around the world
– Near weekly meetings with families to help them understand the genetics of SCN8A, learn what we know about their chid’s mutation in terms of likely development outcomes and the best possible medications
– The ongoing work necessary to maintain and run our 8 year longitudinal, global Registry that gathers significant data on the experiences of those living with SCN8A
– Publications on the findings of our work in leading journals to ensure that there is better global understanding of SCN8A and appropriate treatments for those diagnosed as soon as possible.
– And more!
Please peruse our website to learn more about the work we do or reach out to us directly if you’d like to talk more.
With many thanks,
Gabi Conecker MPH, Michael Hammer PhD and JayEtta Hecker MS – CoFounders of the International SCN8A Alliance and SCN8A Caregivers