The Cute Syndrome Foundation raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports the families around the world who are affected by this disorder.
The Cute Syndrome Foundation
Do you or your child have SCN8A?
Help The Cute Syndrome Foundation fund SCN8A research and provide family support!
Clinical Trials
Participating in clinical trials is an important way to help accelerate therapeutic development. Stay up to date about current and future opportunities below.
Annual Gathering
Connect in person with other SCN8A families and learn about current research by attending the Annual SCN8A Clinician, Researcher, and Family Gathering each December.
Resources
Having a new diagnosis can be overwhelming. We have compiled a list of many different resources to help you find the equipment and support you might need.
About SCN8A
SCN8A-related disorders are rare genetic conditions caused by changes in the SCN8A gene, which plays an important role in how brain cells function. The impact can vary widely, and may include epilepsy, developmental differences, intellectual disability, autism, movement disorders, and other neurological symptoms. While many individuals with SCN8A-related disorders develop seizures, often beginning in infancy or childhood, others never experience epilepsy.
The Cute Syndrome Foundation (TCSF) is dedicated to improving the lives of individuals and families affected by SCN8A-related disorders. We support families, provide trusted resources, advance SCN8A research, and connect patients, caregivers, clinicians, researchers, and industry partners to improve understanding, care, and treatment.
Latest Updates
Highlights from the 2025 SCN8A Gathering
The 11th Annual SCN8A Clinician, Researcher, and Family Gathering was held on December 5th & 6th, 2025, in Atlanta, GA! It was an incredible weekend of learning, collaboration, and community. Click the link below to view photos, recordings, and highlights from the event.
A New Chapter for The Cute Syndrome Foundation
As of April 1, Kacie Craig is stepping away from the Executive Director role of The Cute Syndrome Foundation. On behalf of the Board of Directors, I want to extend our heartfelt thanks to Kacie for her service as Executive Director over the past 4 years. Looking ahead, I am pleased to share that Danielle Hayward will be serving as Interim Executive Director of The Cute Syndrome Foundation.
Uniting a Global Community: Highlights from the SCN2A & SCN8A International Conference
In May of this year, I had the honor of representing TCSF at the Third International SCN2A & SCN8A Conference and Family Gathering in Bonn, Germany. This unique event brought together 130 attendees—clinicians, researchers, industry partners, and families—from over 20 countries.
Discover SCN8A Research
Advancing SCN8A research is an important part of our work. TCSF funds research, supports clinical trial readiness, fosters global collaboration, and expands access to patient data through registries and data-sharing initiatives. We also host the Annual SCN8A Clinician, Researcher, and Family Gathering, bringing families and professionals together to share knowledge, strengthen collaboration, and build connections across the SCN8A community. Together, these efforts help accelerate discovery and move promising treatments forward.
