Our Story
The SCN1A Gain of Function Epilepsy Foundation was founded by parents of children diagnosed with this rare mutation shortly after birth. Experiencing firsthand the severity and isolation that come with a diagnosis of SCN1A gain-of-function, we created this foundation to connect families, advocate for understanding, and accelerate the science.
STORY OF CONNECTING TOGETHER HERE
Our Mission
📣 Raise awareness
We raise national and global awareness about this rare and often misunderstood form of epilepsy.
💜 Support for Families
We empower families affected by SCN1A gain-of-function epilepsy with education, resources, and a compassionate community.
🧬 Drive Research
We advocate for and fund research to better understand SCN1A gain-of-function mutations and advance effective treatments.
🤝 Build Community
We advocate for and fund research to better understand SCN1A gain-of-function mutations and advance effective treatments.
Meet the team
PLACE HOLDER IMAGES AND NAMES*
Monet Goode
Eleanor Parks
Monet Goode
Emmet Marsh
Eleanor Parks
Emmet Marsh