PROGRAMS

rare genetic disorder support,

Brooks's Birthday Club!

Brooks’s Birthday Club is in memory of Brooks Thomas Richter who gained his angel wings on his 3rd Birthday. Brooks was a true warrior who loved birthdays although he only was on earth for three. He loved being surrounded by his family and friends; and we loved celebrating what an amazing, strong, and resilient boy he was. Our hope is to provide a smile to the warrior receiving the birthday surprise and to know that they are loved fiercely by so many.

— The Richter Family

Your child will receive a birthday card on their birthday and possibly even a little extra something special! Also, with your permission, we will do a special shout-out posting on social media for their birthday. Sign up today!

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rare genetic disorder support,

SuperSibs Club

Welcome to the SuperSibs Club! We are thrilled to have you on board. Our club is committed to creating support for the siblings of children with SCN2A related disorders. SuperSibs of all ages can connect with others like themselves throughout the year so stay tuned for communications on upcoming events, creative projects, helpful resources, and giveaways!

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scn2a gene mutation research

SCN2A Family Event Grant

The FamilieSCN2A Foundation is proud to continue offering the SCN2A Family Event Grant, designed to bring SCN2A families together, strengthen our community, and build lasting connections. This grant (up to $500) allows families to organize and host events of their choice—whether it’s a local gathering, a retreat, or another type of meet-up—with all expenses covered by the Foundation. These events provide a valuable opportunity to connect, share experiences, and form meaningful relationships with others who understand their journey. By supporting family-led events, we aim to foster a stronger sense of community and support within the SCN2A family.

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family resources for scn2a syndrome

Warrior Wednesday

Inspired by the strength of Amelia Weaver, Warrior Wednesdays is a special weekly tradition at the FamilieSCN2A Foundation. This program celebrates the resilience and courage of individuals in our community. Each week, we randomly select a Warrior to highlight on our Social Media Pages, shining a light on them and bringing a little brightness to our week. Warrior Wednesdays remind us of the strength within the SCN2A community, encouraging us all to "Fight On" as we share and celebrate each Warrior’s journey. If you are interested in learning more or would like your Warrior to be featured, please reach out to our Program Manager, Amanda Gale at amanda.gale@scn2a.org.


family resources for scn2a syndrome

Caregivers Connection

While our Town Hall gatherings focus on updates in research and treatment pipelines for the SCN2A community, our Caregiver Connection provides a supportive space specifically for parents and caregivers of a loved one with an SCN2A-related disorder. This program offers an opportunity to share both hardships and successes, celebrate the inchstones, and promote self-care for those juggling multiple "hats". We’re excited to offer this new program and would love to hear how we can best support you and your family.

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Our goal is to find a cure!

Did you or your child just receive a new diagnosis of SCN2A? If so, please know you are not alone!