Rare Epilepsy Organizations: Fostering Community and Advancing Research

This week on Seizing Life® we speak with two rare epilepsy organizations, The KCNT1 Epilepsy Foundation and The Cute Syndrome Foundation, in an episode recorded at Epilepsy Awareness Day at Disneyland this past November.

Small, grassroots organizations that focus on rare epilepsies are often founded by families impacted by the disease. In addition to creating community and providing support to families, these organizations are essential in raising awareness and funding research to improve care and treatment options for rare epilepsy syndromes. The KCNT1 Foundation and The Cute Syndrome Foundation are two such organizations created by families living with a rare epilepsy. Dr. Justin West, President of the KCNT1 Epilepsy Foundation, and Liz Ramirez, Bereavement Support and Grants Advisor for The Cute Syndrome Foundation, explain the rare epilepsy syndromes that have impacted their families and speak about the mission and aims of their respective organizations. They also outline the research currently being funded through CURE Epilepsy’s Rare Epilepsy Partnership Award, and share their hopes for the future of research around these rare epilepsy syndromes.

Special thank you to our friends and organizers of Epilepsy Awareness Day at Disneyland for allowing CURE Epilepsy to film this Seizing Life episode onsite during EADDL 2023.

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