The Cute Syndrome Foundation: SCN8A Epilepsy Support, Awareness, and Research
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  • Gathering Family Portal
    • 2020 Annual Gathering >
      • Video Page
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      • Day 1 Agenda
      • Day 2 Agenda
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Do you have a child with SCN8A?

Join our family support group on Facebook!
JOIN OUR COMMUNITY

The Cute Syndrome Foundation Is Currently Funding SCN8A Epilepsy Research!​

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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.
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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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TCSF's 2020 Virtual Clinician, Researcher, and Family Gathering

Everything in 2020 felt different, didn't it? This year The Cute Syndrome Foundation's 6th Annual Clinician, Researcher, and Family Gathering was no exception...as we moved forward with a fully virtual Gathering...
Read More

SCN8A Warriors

Make sure to check out our SCN8A Warriors page to see some of the cute faces behind The Cute Syndrome!
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Follow us on Instagram @thecutesyndrome!

Past Annual Reports

Past PCDH19 Efforts

​Privacy Policy

​Annual SCN8A Family Gathering Portal
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The Cute Syndrome is registered as a tax-exempt organization under IRS section 501(c)(3).
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​Our tax identification number is: 46-2699066.

© The Cute Syndrome Foundation, All rights reserved
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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Sponsors
    • 2019 Annual Report
  • Families
    • Join our SCN8A Community
    • SCN8A Warriors
    • Reference Guide
    • Shareable Resources
    • Family Meetup Grant Application
  • Events
    • 2020 Annual Gathering
    • Annual SCN8A Clinician, Researcher, and Family Gathering
    • Researcher Roundtable
    • Awareness Day
  • Research
    • Research Grants
    • SCN8A Registry
  • Donate
    • How You Can Help
    • SCN8A Awareness Gifts
  • Contact
  • Gathering Family Portal
    • 2020 Annual Gathering >
      • Video Page
    • 2019 Annual Gathering >
      • Day 1 Agenda
      • Day 2 Agenda
      • Presentations
      • Speakers
      • Video Page
    • SCN8A Lexicon
  • Blog
  • Shop