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Westin Bonaventure Downtown LA
Los Angeles, CA
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Friday, December 6th &
​Saturday, December 7th

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.​

2024 Agenda

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 are available for those who are unable to join us in person. The event will also be recorded for viewing at a later date.
Friday, December 6, 2024     
Family Education 1:00-4:00 PM (PST)
1:00 pm       Family registration and meet & greet
1:30 pm       Welcome and what to expect for the weekend
2:00 pm       Break
2:30 pm       SCN8A 101
3:15 pm       Understanding Treatment Strategies for SCN8A-Related Disorders
4:00 pm       Break

Professionals and Families 6-10:00 PM (PST)
5:00 pm        Registration and cocktail hour
6:00 pm        Welcome
6:10 pm        Family talk
6:25 pm        Cenobamate as Add-On Treatment for SCN8A-DEE​
6:40 pm        Sleep Disturbances in SCN8A‐related Disorders​
6:55 pm        SCN8A Natural History Study
7:10 pm        SCN8A angels
7:25 pm        Dinner break
7:55 pm        Relutrigine—Revolutionizing the Treatment for SCN8A
8:20 pm        Family talk
8:35 pm        A Research Roadmap For SCN8A-related Disorders​
8:50 pm        SCN8A Data Integrations—Scaling Variants to Cell
Resolution
9:05 pm        Development of Antisense Oligonucleotides to Treat SCN8A Epilepsy
9:30 pm        CUTIES Awards and closing remarks
Saturday, December 7, 2024                          
Family Activities 8:00 AM-3:00 PM (PST)
8:00 am      Breakfast buffet and TCSF morning welcome
8:30 am      A Conversation with Citizen Health
9:00 am      GROUP PHOTO
9:30 am      Industry panel with Neurocrine Biosciences and Praxis Precision Medicines
10:15 am    TCSF programs update
11:00 am    Seizure Safety and SUDEP*
12:00 pm    Lunch buffet
12:30 pm    The Heart of the Story: Cultivating Connection and Empowerment Through Narrative
2:00 pm      Breakout sessions (The Calm Toolbox: Strategies for Easing Anxiety, Behavior Group, Dads Hangout Group)


*Music therapy and video games will be provided in the Avalon Room for those parents and/or children that would prefer an alternate activity.
**Childcare will not be provided, please ensure that children are supervised at all times.**

2024 Gathering Shirts

2023 Photos

Photo Credit: Ryan Collerd
www.ryancollerd.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. ​

2024 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