The Cute Syndrome Foundation Is Currently Funding SCN8A Epilepsy Research!
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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NBI-921352 Clinical TrialThe study to evaluate NBI-921352 as adjunctive therapy in subjects with SCN8A Developmental and Epileptic Encephalopathy Syndrome (SCN8A-DEE) in patients age 2-21 is now recruiting at 6 US sites...
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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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New Beginnings: A Letter from Founder, Hillary Savoie
Hello SCN8A Community—founding The Cute Syndrome Foundation and running it these last almost 9 years has been one of the greatest honors of my life. This foundation has been responsible for some of the greatest lessons, friendships, and joys of my life. Sometimes it happens that a thing you've made takes on a life of its own... |
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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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