The SCN2A Foundation is a global initiative dedicated towards accelerating research and treatment for SCN2A. We plan to achieve this by building collaborative networks among the global research community, organizing resources, and strategically investing in highly focused research directed towards therapeutic development.
Growing and engaging a global collaborative community to support the most up to date information about SCN2A related therapies
Create and promote patient led events to raise awareness for funding SCN2A targeted therapeutic research
Fund, develop, execute, and iterate on targeted research to support therapeutic development for SCN2A.
We plan to unite the global communities of SCN2A related physicians, researchers, patients, and industry through annual meetings, online forums, and synergistic partnerships - with an open source philosophy.
Our story began when we nearly lost our son due to a change in epileptic medication to treat his epilepsy. Diagnosed autistic at 14 months, then later having a series of catastrophic seizures at 18 months, our son Jack was placed on a broad spectrum epilepsy medicine that caused a series harsh side effects.
After a year without seizures, we asked for and were given what everyone felt would be a medication with a better side effect profile. Unfortunately, this change resulted in life threatening seizures, and after months of hospital visits, our son formally received genetic testing, and his SCN2A diagnosis.
After receiving life saving guidance from a mom in the SCN2A community, we came to understand that Jack’s particular variant of SCN2A should not taken sodium channel blockers.
Had our son received genetic testing after his first seizure, and had there been publicly available information on this, we would have years of development back with our son.
After finishing course work in drug development, and with the scientific & clinical guidance of prominent functional medicine experts, precision health consultants, and geneticists, the SCN2A Foundation was co-founded by Shannon and Jason Curry.
Our goal is to accelerate targeted research that’s specific to therapeutic development for SCN2A, and to improve survival and its debilitating symptoms.