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.
Friday December 2, 2022
Family Education 2-4 PM (CST)
2:00 pm SCN8A 101
3:00 pm SCN8A Family Meet & Greet
Professionals and Families 6-10:30 PM (CST)
6:00 pm Welcome
6:10 pm Clinician Presentations
7:10 pm Industry Presentation
7:35 pm DINNER BREAK
8:05 pm Family Talk
8:15 pm Industry Presentation
8:40 pm Research Presentations
9:40 pm Family Talk
9:50 pm 2021 Grant Updates
10:10 pm SCN8A Angels
10:20 pm Closing
Saturday December 3, 2022
Family Education 9-12 PM (CST)
9:00 am Breakfast with Families
9:30 am What Can Your Foundation Do for You?
10:30 am Unseen Documentary Viewing
11:30 am Unseen Discussion Panel–Lead by SCN8A parent Sandy Bush
Cute Connections Dance Party 12-2 PM (CST)
12:00 pm Dance Party–DJ, Line Dancing, and Lunch
After 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.
Past Annual Reports
Past PCDH19 Efforts
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.
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