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About the Cute Syndrome Foundation
Our History: The Cute Syndrome was a term used by the family of Esmé Savoie to describe the suite of symptoms that she had since birth. These symptoms are now presumed to be caused by as many as four separate genetic mutations, including PCDH19 and SCN8A. However the Cute Syndrome has evolved into something more than just Esmé’s condition—it is now the name of the foundation that represents an international community affected by these rare disorders.
Learn more about what we have done…
Our Mission: The Cute Syndrome Foundation raises awareness of SCN8A and PCDH19 mutations, funds the dedicated and talented scientists researching SCN8A and PCDH19, and supports the families around the world who are affected by these disorders.
Does your child have an SCN8A mutation? Join our SCN8A family group by emailing us...
Our Vision: The Cute Syndrome Foundation’s goals have evolved since its inception—when it focused exclusively on PCDH19—to today’s primary focus on SCN8A. As we move forward we want to make the Cute Syndrome Foundation the starting point for support for newly diagnosed families—who we hope to reach as they are receiving diagnosis. We will help clinicians standardize treatment for individuals with SCN8A. We will continue to work individually as well as in collaboration with other foundations to expand scientific knowledge of rare genetic mutations associated with pediatric epilepsy and remain the mainstay foundation to increase public knowledge of SCN8A mutations as well as rare genetic mutations and pediatric epilepsies.
Check out our SCN8A Information Sheet here
The Cute Syndrome Foundation Is Funding PCDH19 Epilepsy and SCN8A Epilepsy Research!
It wouldn't be surprising if you have never heard of PCDH19 Epilepsy or SCN8A Epilepsy. These rare disorders, which are both caused by genetic mutations, are just in the early stages of being diagnosed and understood. Our team at The Cute Syndrome Foundation is working hard to help bring these disorders into the light, to fund the dedicated and talented researchers working to better understand them, and to support the families who are affected by these disorders.
You are part of that mission--your donations, volunteer time, and social media support are essential to our momentum.
In two years TCSF has made amazing progress with funding PCDH19 research. We have raised more than $120,000 for PCDH19 Epilepsy research and awareness. Read more about the PCDH19 research we are funding.
Additionally, with our partners we have helped raise over $45,000 for SCN8A Research, helping to fund $20,000 to fund an SCN8A Registry and promising research at the University of Michigan.
The Cute Syndrome is registered as a tax-except organization under IRS section 501(c)(3). Our tax identification number is: 46-2699066