FamilieSCN2A Foundation

The FamilieSCN2A Foundation is a leading non-profit organization dedicated to accelerating research, building community, and advocating for individuals affected by SCN2A-related disorders, including rare forms of epilepsy and autism. Founded in 2015 by parents, the foundation funds critical research into the SCN2A gene, which encodes the NaV1.2 sodium channel, a key regulator of neuronal excitability. The organization maintains a robust research roadmap and treatment pipeline, collaborating with academic institutions and biotechnology companies to advance therapies such as antisense oligonucleotides (ASOs) and small molecules. Through initiatives like the Dragonfly Global SCN2A Registry and strategic partnerships, the foundation plays a pivotal role in clinical trial readiness and patient-centered drug development. Their efforts have also led to significant regulatory milestones, such as the establishment of a unique ICD-10-CM code for SCN2A-related neurodevelopmental disorders.