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.
Thanks to our partnerships with Aduje o Rafa, the American Epilepsy Society, and the Epilepsy Foundation of Metropolitan New York, among others, we have helped to fund a series of SCN8A research projects including: Dr. John Schreiber's Access to SCN8A Expert Care Pilot Project, Dr. Ted Cummin's SCN8A Zebrafish research, and Dr. Michael Hammer's SCN8A Registry. With our Scientific Advisory Committee we produce an SCN8A Clinician Reference Guide, hold an annual SCN8A Clinician, Researcher, and Family Gathering, and convene SCN8A Research Meetings—all with an eye toward improving the lives of those with SCN8A mutations.
In the past The Cute Syndrome Foundation has funded PCDH19 research. Read more about the PCDH19 research have funded.
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.
Thanks to our partnerships with Aduje o Rafa, the American Epilepsy Society, and the Epilepsy Foundation of Metropolitan New York, among others, we have helped to fund a series of SCN8A research projects including: Dr. John Schreiber's Access to SCN8A Expert Care Pilot Project, Dr. Ted Cummin's SCN8A Zebrafish research, and Dr. Michael Hammer's SCN8A Registry. With our Scientific Advisory Committee we produce an SCN8A Clinician Reference Guide, hold an annual SCN8A Clinician, Researcher, and Family Gathering, and convene SCN8A Research Meetings—all with an eye toward improving the lives of those with SCN8A mutations.
In the past The Cute Syndrome Foundation has funded PCDH19 research. Read more about the PCDH19 research have funded.
Where did the name "The Cute Syndrome" come from? Check out this blog post...
Latest Updates
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International SCN8A Awareness Day!On February 9th we celebrated International SCN8A Awareness Day. This year, our theme was two simple, short, yet powerful words – “I Am.” No two SCN8A journeys are identical, so we invited SCN8A warriors and their families to fill in the blank and tell their stories. We received over 40 submissions from families around the world to share on social media. Click the link below to view our 2025 SCN8A Awareness Day video!
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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 Decade of Progress: Highlights from the 10th Annual SCN8A Gathering
The Cute Syndrome Foundation’s 10th Annual SCN8A Clinician, Researcher, and Family Gathering was a powerful and inspiring event, bringing together families, researchers, and clinicians to foster connection, education, and hope. Held in Los Angeles, CA, this milestone gathering not only celebrated a decade of progress but also reinforced our collective commitment... |
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Past Annual Reports
Past PCDH19 Efforts Privacy Policy The Cute Syndrome Foundation PO Box 842 Ozark, MO 65721 |
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