About  |  Agenda  |  CUTIEs Awards  |  Past Gatherings  |  Photos  |  Speakers  |  Sponsors  |  Virtual Silent Auction
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​​TBD (hotel info coming soon)
Orlando, FL
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Friday, December 1st &
​Saturday, December 2nd

Each year, The Cute Syndrome Foundation hosts the annual SCN8A Clinician, Researcher, and Family Gathering

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.​

2022 Agenda (2023 coming soon)

Professionals are invited to join us on Friday night for a full agenda of industry, clinical, research, and family presentations. Social and educational opportunities are available for SCN8A families on Friday afternoon and Saturday morning. Virtual ticket options for Friday night are available for those who are unable to join us in person. The Friday night event will also be recorded for viewing at a later date.
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

2022 Photos

Virtual Silent Auction
More information about the 2023 silent auction coming soon!

If you are interested in making an in-kind donation of goods, experiences or services to the 2023 Virtual Silent Auction, contact danielle@thecutesyndrome.com.

CUTIES Awards

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. ​

2022 Sponsors

Platinum Event Sponsors
​Silver Event Sponsors
Want to help make this event a success?
​Consider becoming an event Sponsor or making a donation. Inquiries should be directed to Kacie Craig.

Learn More About Past Gatherings