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 1, 2023
Family Education 12:30-3:30 PM (EST)
12:30 pm Registration and family meet & greet
1:00 pm SCN8A 101
2:00 pm Break
2:30 pm Emerging Treatment Options for SCN8A
Professionals and Families 6-10:30 PM (EST)
5:00 pm Registration
6:00 pm Welcome
6:15 pm Industry presentation
6:45 pm Family talk
7:00 pm SCN8A Angels
7:15 pm DINNER BREAK
7:45 pm Clinician presentations
8:35 pm Industry presentation
9:05 pm Research presentations
10:10 pm CUTIES Awards and closing
Saturday December 2, 2023
Family Activities 8 AM-3 PM (EST)
8:00 am Breakfast with families
8:30 am International updates
8:45 am "Make Your Mark" video
9:00 am Break
9:30 am “Make Your Mark” art, games, crafts, and a visit from therapy dogs
10:00 am Heroes for Hire–your favorite characters come to visit!
12:00 pm Lunch buffet
12:30 pm Casual family hangout
12:45 pm Group Picture
1:00 pm Sign up for a 15-minute chair massage, hang out in a private cabana by the pool, or watch a movie
Visit our Bonfire store to order your official 2023 Clinician, Researcher, and Family Gathering merchandise. Families will take a group photo in our shirts on December 2nd. If you're joining us virtually, send us a photo in your shirt or tag @thecutesyndrome on social media!
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.