The Cute Syndrome Foundation: SCN8A Support, Awareness, and Research
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Annual Clinician, Researcher, & Family Gathering

DECEMBER 2025
About  |  Agenda  |  Shirts |  CUTIES Awards  |  Past Gatherings  |  Photos  |  Sponsors

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TBD
Atlanta, GA

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December 2025


VIEW THE 2024 EVENT RECORDING
 

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

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2016, Houston, TX
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2017, Washington, DC
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2018, New Orleans, LA
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

*Check back in the fall for the 2025 Gathering 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.**
View Speakers
 

 

2024 Gathering Shirts

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BUY NOW

 

2024 Photos

VIEW FULL ALBUM
Photo Credit: Ryan Collerd
www.ryancollerd.com
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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. ​
MEET THE CUTIES AWARD WINNERS

2024 Sponsors

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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


2024 Gathering in Los Angeles, CA
2023 Gathering in Orlando, FL
2022 Gathering in Nashville, TN
2021 Gathering in Chicago, IL
2020 Gathering — Virtual
2019 Gathering in Baltimore, MD
2018 Gathering in New Orleans, LA
2017 Gathering in Washington, DC
2016 Gathering in Houston, TX
2015 Gathering in Philadelphia, PA
VIEW ALL GATHERING PHOTOS
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
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  • Home
  • About
    • About SCN8A
    • About Us
    • Partner Organizations
    • Volunteers
    • Annual Report
  • Families
    • Join our SCN8A Community
    • Connor James Smith Patient Assistance Grant
    • Educational Videos >
      • Annual Gathering Event Recordings
      • Cheers to a Good Life
      • Clinical Trial Readiness Series
      • Family and Researcher Roundtable Series
      • Meaningful Change Series
    • Resources >
      • Caregiver Support
      • Reference Guide
      • Shareable Graphics
    • CUTE Connections Grant
    • SCN8A Warriors
    • Virtual Memory Wall
  • Events
    • Annual SCN8A Clinician, Researcher, and Family Gathering >
      • CUTIES Awards
      • Speakers
    • Researcher Roundtable
    • Awareness Day
    • Layla: The Festival of Mark Making
    • Virtual 5k
  • Research
    • Clinical Trials
    • Research Grants
    • SCN8A Registry
  • Donate
  • Contact
  • Blog
  • Shop