Join the Fight for the 11%

We are mobilizing a community that has been overlooked for too long. Here is how you can directly impact the future of SCN1A Gain-of-Function research.

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Join the Registry

For Affected Families: Help us map this rare condition. By sharing your child's symptom timeline and medication responses, you provide the critical data needed for clinical trials.

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Clinical Partnership

For Researchers & MDs: We are actively seeking institutional partners studying EIDEE and GoF mechanisms. Connect with us to discuss grants, cohorts, and data sharing.

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Become an Advocate

For Supporters: Help us reach our Year 1 seed funding goals. Host a local fundraiser, share our clinical timeline with your network, or make a direct contribution.

A Direct Line to the Foundation

Whether you are a family seeking guidance after a terrifying new diagnosis, a researcher looking to collaborate on EIDEE data, or an advocate wanting to help fund the cure, our founding leadership team is ready to connect.

Please use the secure form to route your message to the correct department. A member of our team will review your inquiry and respond within 24-48 hours.

"We are building the raft while swimming. Every connection, every data point, and every dollar helps us secure a better future for children with SCN1A Gain-of-Function."