Join the Fight for the 11%

Progress in ultra-rare disease research is driven by a committed community. Whether you are a parent, a researcher, or an advocate, your contribution directly fuels a cure.

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Join the Registry

For Families: Sharing your child's medical timeline and medication responses is the single most valuable thing you can do to accelerate clinical trials.

Join the Network
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Scientific Partnership

For Clinicians: We are actively building a network of GoF specialists. Partner with us to share data, discuss grants, and refine treatment protocols.

Coming Soon
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Fund the Mission

For Supporters: Your seed funding allows us to sponsor independent research and bridge the gap for families navigating a new diagnosis.

Donate Now

More Ways to Help

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Raise Awareness

Help us fight misdiagnosis by sharing our "Differentiated Timeline" with your local pediatric neurology network. Tag us in your journey to help other families find us.

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Community Fundraising

Host a birthday fundraiser on Facebook or Instagram. Peer-to-peer giving is how we reach new donors and fund our annual seed grants.

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National Events & Advocacy

Join national movements like the Epilepsy Foundation's "Walk to End Epilepsy" or attend conferences like the American Epilepsy Society (AES) annual meeting.

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Volunteer Your Skills

Are you a designer, writer, or grant manager? We are a family-led team and always welcome professional expertise. Message us to get started.

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Wear the Cause

Purchase SCN1A GoF gear from our online store. 100% of proceeds go directly toward research and family resources.

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Host a Local Benefit

Turn your passion into progress. Whether it’s a neighborhood bake sale, a charity workout, or a benefit dinner, hosting a local event is a powerful way to rally your community.

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Corporate Matching

Many employers will double or triple your donation through programs like Benevity or CyberGrants. Check with your HR department to see if your contribution to the SCN1A Gain of Function Foundation qualifies!

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."