The Cute Syndrome Foundation Is Currently Funding SCN8A Epilepsy Research!
SCN8A DEE is a rare disorder, caused by genetic mutations in the gene SCN8A, and it is still in the early stages of being diagnosed and understood. 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.
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.
What's New on the Blog...
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2019 SCN8A Clinician, Researcher, and Family Gathering Booking InformationOur SCN8A Annual Clinician, Researcher, and Family Gathering will be held in conjunction with the American Epilepsy Society Conference on December 6-7, 2019 at the Renaissance Harborplace Hotel in Baltimore Maryland...
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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!
