Our Story

The SCN1A Gain of Function Foundation was founded by parents of children diagnosed with this rare mutation shortly after birth.

Experiencing firsthand the severity and isolation that come with an EIDEE diagnosis—and realizing that standard SCN1A advocacy and treatments were not built for the unique mechanics of our children's "stuck open" channels—we knew a dedicated movement was necessary.

We created this foundation to connect isolated families, advocate for mechanical differentiation in the clinic, and accelerate targeted scientific research.
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Our Mission

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Raise Awareness

We raise national and global awareness about this rare and often misunderstood form of epilepsy, ensuring clinicians understand the danger of treating the 11% like the 89%.

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Drive Research

We advocate for and fund research to better understand SCN1A Gain-of-Function mutations, supporting institutions investigating the Philadelphia Variant and advancing effective treatments.

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Support for Families

We empower families affected by SCN1A GoF epilepsy with education, clinical resources, and a compassionate community so no one has to navigate this devastating diagnosis alone.

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Build Community

We unite patients, researchers, and advocates to create a powerful registry of real-world data, accelerating clinical trial readiness for our ultra-rare cohort.

Join Us

Progress in rare disease research happens when communities come together. Whether you are a family member, clinician, researcher, or advocate, your voice and involvement matter. Together, we can drive research forward!

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