The 2025 SCN8A Gathering recording is now available!
Join the TCSF Family Network to receive updates about the Annual Gathering
Join the TCSF Family Network to receive updates about the Annual Gathering
Hilton Garden Inn Atlanta Downtown
Atlanta, GA |
December 5th & 6th
2025 |
Each year, The Cute Syndrome Foundation hosts the annual SCN8A Clinician, Researcher, and Family Gathering
2015, Philadelphia, PA
2019, Baltimore, MD
2025, Atlanta, GA
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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. |
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 5, 2025
Family Education 1:00-4:00 PM (EST)—4th Floor Oceanic Ballroom
12:30–1:00 PM | Welcome & Check-In
1:00–1:30 PM | Opening Session
1:30–2:30 PM | Community Connections: Meet Your SCN8A Family
2:30-3:00 PM | SCN8A 101
3:15-4:00 PM | Understanding Treatment Strategies for SCN8A-Related Disorders
12:30–1:00 PM | Welcome & Check-In
1:00–1:30 PM | Opening Session
1:30–2:30 PM | Community Connections: Meet Your SCN8A Family
2:30-3:00 PM | SCN8A 101
3:15-4:00 PM | Understanding Treatment Strategies for SCN8A-Related Disorders
Family and Professionals 5:00-9:30 PM (EST)—4th Floor Oceanic Ballroom
5:00-6:00 pm | Cash bar and event check-in
6:00–6:10 pm | Welcome
6:10–6:25 pm | Family Talk, Sherress Bowen
6:25–6:35 pm | Utilizing Base Editing to Target SCN8A Epileptic Encephalopathy
6:35–6:40 pm | SCN8A Italia update
6:40–6:50 pm | Advancing Clinical Management of SCN8A-Related Disorder through Machine Learning
6:50–7:00 pm | CRISPR Activation for Sodium Channel Disorders: Insights from SCN2A Haploinsufficiency
7:05–7:20 pm | The EMBOLD Study, Praxis Precision Medicines
7:20–7:30 pm | SCN8A Angels
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7:30–8:00 pm | DINNER BREAK
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8:00–8:15 pm | SCN8A Awareness Day 2026 theme reveal
8:15–8:30 pm | Bexicaserin: An Investigational Therapy for Developmental and Epileptic Encephalopathies (DEEs), Lundbeck
8:30–8:45 pm | Family Talk, Katie and Averley Banks
8:45–8:55 pm | From Cells to Seizures: What Brain Organoids are Teaching us About SCN8A Epilepsy
8:55–9:05 pm | SCN8A Consensus Guidelines
9:05–9:15 pm | Leveraging Real-World Data to Decode Disease Trajectories in SCN8A-Related Disorders
9:20–9:30 pm | SCN8A community announcement
9:30–9:45 pm | CUTIES awards and closing remarks
5:00-6:00 pm | Cash bar and event check-in
6:00–6:10 pm | Welcome
6:10–6:25 pm | Family Talk, Sherress Bowen
6:25–6:35 pm | Utilizing Base Editing to Target SCN8A Epileptic Encephalopathy
6:35–6:40 pm | SCN8A Italia update
6:40–6:50 pm | Advancing Clinical Management of SCN8A-Related Disorder through Machine Learning
6:50–7:00 pm | CRISPR Activation for Sodium Channel Disorders: Insights from SCN2A Haploinsufficiency
7:05–7:20 pm | The EMBOLD Study, Praxis Precision Medicines
7:20–7:30 pm | SCN8A Angels
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7:30–8:00 pm | DINNER BREAK
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8:00–8:15 pm | SCN8A Awareness Day 2026 theme reveal
8:15–8:30 pm | Bexicaserin: An Investigational Therapy for Developmental and Epileptic Encephalopathies (DEEs), Lundbeck
8:30–8:45 pm | Family Talk, Katie and Averley Banks
8:45–8:55 pm | From Cells to Seizures: What Brain Organoids are Teaching us About SCN8A Epilepsy
8:55–9:05 pm | SCN8A Consensus Guidelines
9:05–9:15 pm | Leveraging Real-World Data to Decode Disease Trajectories in SCN8A-Related Disorders
9:20–9:30 pm | SCN8A community announcement
9:30–9:45 pm | CUTIES awards and closing remarks
Saturday, December 6, 2025
Family Day 9:00-1:30 PM (EST)—4th Floor Oceanic Ballroom
9:00–10:00 am | Science recap + live Q&A
10:00–10:30 am | Group photo
10:30–11:30 am | Parent panel #1 – More Than Just Seizures: Safety, Adaptation, and Family Strength
11:30 am–12:30 pm | Parent panel #2 – Making Impossible Decisions
12:30–1:30 pm | Lunch + closing program
9:00–10:00 am | Science recap + live Q&A
10:00–10:30 am | Group photo
10:30–11:30 am | Parent panel #1 – More Than Just Seizures: Safety, Adaptation, and Family Strength
11:30 am–12:30 pm | Parent panel #2 – Making Impossible Decisions
12:30–1:30 pm | Lunch + closing program
Cute Connections Outing 2:15 PM (EST)—Georgia Aquarium
2:15 pm | Meet in the hotel lobby, Tour begins at 2:30 pm
Tickets are provided by TCSF based on the number you submitted for the aquarium in your registration.
*All programming and times are subject to change.
**Childcare will not be provided; please ensure that children are supervised at all times.**
2:15 pm | Meet in the hotel lobby, Tour begins at 2:30 pm
Tickets are provided by TCSF based on the number you submitted for the aquarium in your registration.
*All programming and times are subject to change.
**Childcare will not be provided; please ensure that children are supervised at all times.**
2025 Photos
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CUTIES AwardsAfter 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.
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2025 Sponsors
Platinum Sponsors
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Bronze Sponsor
Want to help make this event a success?
Consider becoming an event sponsor or making a donation. Inquiries should be directed to Kacie Craig.
Consider becoming an event sponsor or making a donation. Inquiries should be directed to Kacie Craig.
Learn More About Past Gatherings
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2025 Gathering in Atlanta, GA (coming soon)
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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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