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. Epilepsy is a hallmark of this disorder, with the majority of patients experiencing seizures early in life. 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...
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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Family and Researcher RoundtableHaving made substantial strides in preparing the SCN8A community for two clinical trials over the past three years, TCSF shifted its fall education series from Clinical Trial Readiness to a dynamic Family and Researcher Roundtable series, offering a broader scope of discussions on research and quality-of-life topics to ensure our community remains well-informed and actively engaged in the care and treatment of their loved ones with SCN8A.
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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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Cute Connections 2023: SCN8A Families Find Fun, Fellowship, and Respite
As the pandemic began to settle, TCSF realized that providing year-round virtual activities is still imperative to our families, but it was now time to focus on engaging in more face-to-face fellowship activities. In early 2023, TCSF announced the CUTE Connections grant, and immediately families jumped on the opportunity to organize regional meet-ups... |
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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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Our tax identification number is: 46-2699066. © The Cute Syndrome Foundation, All rights reserved
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