You are not alone. Thousands of parents, medical experts, and volunteers from around the world have joined this organization in order to help you navigate the complex world of the spectrum of SCN1A related epilepsies, Febrile Seizures, GEFS+, SIMFE, ICE-GTC, SMEB and SMEI (Dravet syndrome).
We encourage each of you to make new friends here with us and build a strong pool of support. Build your own personal network of expert resources, friendly voices, and knowledgeable advisors. Exchange ideas, ask questions, discuss options, share updates, trade resources, celebrate victories, cry over setbacks, get help and give help – this is the place where families help other families.
Being a hero is not something you signed up for in life; but facing the constant struggles, overwhelming stress, and every day challenges that come with a special needs child has turned you into an amazing person. Come meet other superheroes and be inspired, be hopeful, and be a hero to other parent’s in need.
We know you are fighting for your child’s life. Help us to help you be better equipped in your battle – let us know what other services and programs you need. Let us know what additional tools you want and please tell us what we can do better! We’re listening!
Connect with Other Families Make Friends & Get SupportJoin Our Patient Registry!
Each of our children has a story. View our Stories and Be Inspired!