The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop

Do you or your child have SCN8A?

Join our family support group on Facebook!
JOIN OUR COMMUNITY

Help The Cute Syndrome Foundation fund SCN8A research and provide family support!​

Clinical Trials


Participating in clinical trials is an important way to help accelerate therapeutic development. Stay up to date about current and future opportunities below.
PARTICIPATE IN RESEARCH

Annual Gathering


Connect in person with other SCN8A families and learn about current research by attending the Annual SCN8A Clinician, Researcher, and Family Gathering each December.
ATTEND THE GATHERING

Resources


Having a new diagnosis can be overwhelming. We have compiled a list of many different resources to help you find the equipment and support you might need.
FIND TOOLS & SUPPORT
2022
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. Although epilepsy is often a significant aspect of this disorder, with the majority of patients developing seizures early in life, further understanding has revealed that not all individuals with an SCN8A diagnosis will experience seizures. 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...

Latest Updates


Praxis topline EMBOLD results September 2024

International SCN8A Awareness Day!

On February 9th we celebrated International SCN8A Awareness Day. This year, our theme was two simple, short, yet powerful words – “I Am.” No two SCN8A journeys are identical, so we invited SCN8A warriors and their families to fill in the blank and tell their stories. We received over 40 submissions from families around the world to share on social media. Click the link below to view our 2025 SCN8A Awareness Day video!
WATCH NOW

SCN8A Warriors

Make sure to check out our SCN8A Warriors page to see some of the cute faces behind The Cute Syndrome Foundation!
Picture

What's New on the Blog?


Picture
A Decade of Progress: Highlights from the 10th Annual SCN8A Gathering
The Cute Syndrome Foundation’s 10th Annual SCN8A Clinician, Researcher, and Family Gathering was a powerful and inspiring event, bringing together families, researchers, and clinicians to foster connection, education, and hope. Held in Los Angeles, CA, this milestone gathering not only celebrated a decade of progress but also reinforced our collective commitment...
READ MORE

Follow us on Instagram @thecutesyndrome

Powered by Curator.io
Past Annual Reports

Past PCDH19 Efforts

​Privacy Policy

The Cute Syndrome Foundation

PO Box 842 Ozark, MO 65721​
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
Picture
Picture
Picture
Picture
  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop