Vision

Those living with SCN8A and their families are the heartbeat of our mission. Their future and our hope inspire a network of support, uniting a global team of researchers, clinicians, epilepsy leadership groups, and pharmaceutical companies. Collaborating for a cure, we unite in our mission to advance the science of SCN8A, see improved outcomes and quality of life for everyone touched by SCN8A and other rare epilepsies.

Goals

1. 1.To set global SCN8A standards, enhance diagnostic precision, & promote data-driven treatments. Committed to advancing the science of SCN8A, bridging knowledge gaps, & building scientific consensus.
2. 2.To refine DEE healthcare tools, measure 'inchstones' of progress, & develop new metrics. Current tools miss subtle progress; we're engaging industry & lobbying FDA for robust, validated methods.
3. 3.To empower SCN8A research, unify stakeholders, and bridge lab-life gaps. Silos hinder solutions; our efforts & 8-year registry drive innovation, facilitating G/LOF research & tailored therapies.