About us
The FamilieSCN2A Foundation was created by parents of children diagnosed with rare forms of epilepsy and autism as a result of a change in the SCN2A gene.
Our VISION is a world with effective treatments and cures for all SCN2A-related disorders.
Our MISSION is to accelerate research, build community, and advocate to improve the lives of those affected by SCN2A-related disorders around the world.
Our MISSION is to accelerate research, build community and advocate to improve the lives of those affected by SCN2A-related disorders around the world.
Rare and potentially devastating, SCN2A-related disorders affect the entire family. Our team of leaders strive every day and in every way to improve the lives of not only the patients, but the entire family. In doing so, we are guided by the values of urgency, integrity, collaboration, and inclusion.
Who We Are
Family Stories
Hear our stories.
Understand our lives.
Learn about the realities of living with a rare disease caused by the SCN2A gene: The challenges and the triumphs; the joy and the pain. We share our stories to raise awareness, transform statistics into personal experiences, and inspire action toward support and advocacy. Read on and restore your hope in humanity’s resilience.
Support for Bereaved SCN2A Families
You are not alone…
Grieving the loss of a loved one, especially a child, is a journey no family should walk alone. FamilieSCN2A offers a compassionate space for remembrance, connection, and support, honoring every unique path through grief. Whether you seek private connection, community gatherings, or simply a place to feel understood, our bereavement support is here for you. You are not alone.
2022-2025
Strategic Plan
To ensure that actions are aligned with mission and the patient voice, the FamilieSCN2A Foundation Board of Trustees developed a bold plan to execute impactful programs.
In 2025, we are on pace with the vision set forth in the current plan even as we look ahead to the next few years. We share this plan as part of our commitment to the values of urgency, integrity, collaboration, and inclusion and to hold ourselves accountable for advancing the mission.
News and Media
Everything SCN2A, delivered to you, right here: press releases, newsletters, the “Unraveling SCN2A” blog, FamilieSCN2A YouTube channel, and key publications.
Donor Confidence
At The FamilieSCN2A Foundation, we prioritize donor trust by maintaining the highest level of transparency and stewardship.