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Since 2015, The Cute Syndrome Foundation has hosted the Annual SCN8A Clinician, Researcher, and Family Gathering, which is held in conjunction with the American Epilepsy Society Annual Meeting.
We have hosted over 100 people each year at this Gathering, which is a venue for leading clinicians and researchers to share their work, ask questions, and connect with the experts in life with SCN8A: the families. It is a moving example of what can happen when a group of invested individuals is brought together with the goal of creating better lives for those living with SCN8A. At this Gathering, you see families meeting in real life for the first time after years of creating deep personal bonds over the internet. You also see clinicians and researchers exchanging data among themselves and with families, making the kinds of connections that come from face-to-face interactions. As a result our SCN8A families are empowered with vital information about their children’s health; clinicians learn how to better serve their SCN8A patients; and researchers establish collaborations inspired by the SCN8A patients and their families. The Annual Gathering helps us all be #SCN8AStrong. |
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Friday, December 5, 2025
Family Education 1:00-4:00 PM (EST) 12:30 pm Family check-in 1:00 pm Welcome and meet & greet 2:30 pm SCN8A education for families Professionals and Families 6-9:30 PM (EST) 5:00 pm Cocktail Hour (check-in and cash bar) 6:00 pm Presentations from scientific and clinical experts, stories from SCN8A families, and dinner |
Saturday, December 6, 2025
Family Activities 9:00 AM-1:30 PM (EST) 9:00 am Family-focused education and discussion 12:30 am Lunch and closing session TBD Cute Connection: Georgia Aquarium *All programming and times are subject to change. **Childcare will not be provided; please ensure that children are supervised at all times.** |
CUTIES AwardsAfter our first SCN8A Clinician, Researcher, and Family Gathering, held in 2015, we saw a handful of individuals rising to the opportunity to work collaboratively to improve the health and safety of those living with SCN8A. As a result we created the CUTIES, our annual awards for Champions for Understanding, Treating, Investigating, and Empowering those with SCN8A.
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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 |