SCN8A is a rare disorder, caused by a genetic variation in the gene SCN8A. Early stages of diagnosis and understanding have revealed a broad spectrum of neurodevelopmental disorders ranging from mild behavior or movement disorders to severe developmental and cognitive delays. Although epilepsy is often a significant aspect of this disorder, with the majority of patients developing seizures early in life, further understanding has revealed that not all individuals with an SCN8A diagnosis will experience seizures. Meet some our SCN8A Warriors who live with SCN8A.
Our team at The Cute Syndrome Foundation is working hard to bring SCN8A into the light, to fund the dedicated and talented researchers working to better understand it, and to support the families who are affected by this disorder. But, we can't do it alone: We need your help—your donations, your volunteer time, and your social media support in order to continue to make big things happen for this small, but growing, community.
Where did the name "The Cute Syndrome" come from? Check out this blog post...
Our team at The Cute Syndrome Foundation is working hard to bring SCN8A into the light, to fund the dedicated and talented researchers working to better understand it, and to support the families who are affected by this disorder. But, we can't do it alone: We need your help—your donations, your volunteer time, and your social media support in order to continue to make big things happen for this small, but growing, community.
Where did the name "The Cute Syndrome" come from? Check out this blog post...
Latest Updates
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Highlights from the 2025 SCN8A GatheringThe 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.
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SCN8A Warriors
Make sure to check out our SCN8A Warriors page to see some of the cute faces behind The Cute Syndrome Foundation!
What's New on the Blog?
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A New Chapter for The Cute Syndrome Foundation
Today, I want to share the next step in the leadership transition for the organization. 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... |
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Past Annual Reports
Past PCDH19 Efforts Privacy Policy The Cute Syndrome Foundation PO Box 842 Ozark, MO 65721 |
The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
Our tax identification number is: 46-2699066. © The Cute Syndrome Foundation, All rights reserved
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