Connecting, Learning, and Celebrating: Highlights from the 2025 SCN8A Annual Gathering Weekend2/1/2026 The 2025 SCN8A Annual Gathering, held in Atlanta, GA, was a powerful reminder of what makes this community so extraordinary. Families, clinicians, researchers, and industry partners came together not only to learn but to connect, celebrate, and support one another through shared experiences and a common purpose. This year marked our largest Gathering yet, with 180 SCN8A family members and professionals in attendance.  SCN8A families posing together at the 2025 SCN8A Annual Gathering in Atlanta, GA. A Warm WelcomeThe weekend began with a joyful and heartfelt welcome. Families were greeted by familiar faces, TCSF t-shirts, swag bags, and charming TCSF stuffed animals. These thoughtful touches helped set the tone from the start. This time was intentionally designed to feel warm, inclusive, and centered around families. Opening remarks from TCSF leadership acknowledged the strength and dedication of the SCN8A community. Volunteers, staff, clinicians, researchers, and caregivers were honored for the vital roles they play in supporting families across the globe. The message was clear and deeply felt: no family is alone, and every story matters. The Power of ConnectionOne of the most meaningful aspects of the Gathering was the opportunity for families to meet face-to-face. These conversations, sometimes emotional and sometimes joyful, created immediate bonds and a deep sense of belonging. “It was our first year following the diagnosis in October. It is very comforting to meet others who have endured this process longer and hear the stories of strength and resilience,” shared one parent. Learning TogetherEducation remained a central focus throughout the weekend. Friday afternoon featured an approachable and empowering SCN8A education session led by scientist Raquel Miralles, PhD. Families gained a clearer understanding of SCN8A, current research efforts, and emerging treatment possibilities, and left with both knowledge and hope. Friday evening brought exciting scientific updates from the scientific community, including progress in precision medicine and gene-based editing. These advances were made even more meaningful through powerful and vulnerable family stories shared by Sherress Bowen, Iveri’s mom, and Katie and Averley Banks, Wyatt’s mom and sister, who spoke openly about the difficult challenges of SCN8A while also sharing moments of joy. A Major Milestone: Research Grants ProgramA major highlight of the evening was the announcement of the SCN8A Research Grants Program, a global collaboration among:
Learn more about the program at scn8agrants.org. Honoring Impact: The 2025 CUTIES AwardsThe Gathering concluded Friday with one of its most celebratory moments, the presentation of the 2025 CUTIES Awards, recognizing individuals whose dedication has made a profound impact:
 Reflection, Support, and Honest ConversationsThe connection and learning continued into Saturday with a series of meaningful and impactful sessions. TCSF hosted its first Bereaved Parent Breakfast, creating a dedicated and compassionate space for families who have lost a child to SCN8A. Families also participated in a Scientific Recap and Q&A led by Raquel Miralles, PhD, doctoral student Joshua Hack, and PhD candidate Caeley Reever, which provided an opportunity to revisit key insights in a way that felt accessible and digestible. “I really loved the science recap. The science is so important, but understanding it can be overwhelming,” shared one parent.  Parent PanelsTwo powerful panels created space for open dialogue and shared learning: More Than Just Seizures: Safety, Adaptation, and Family Strength This panel and discussion highlighted how families navigate safety concerns, adapt daily routines, and build resilience beyond seizure management. Making Impossible Decisions This deeply moving panel explored the emotional weight of caring for a medically complex child. Parents spoke candidly about balancing complex medical decisions with comfort, quality of life, and the instinct to protect their children. “The parent panels with open Q&A were also amazing. I think the families really benefited from the open dialogue and learning from one another,” shared another parent. Ending with JoyAfter a day of learning and heartfelt conversations, families gathered for a Cute Connections meetup at the Georgia Aquarium, offering a chance to relax, connect, and simply enjoy time together. A Community Like No OtherThe 2025 Gathering beautifully captured what makes this community so special: the intersection of science and love, education and empathy, resilience and hope. Families left feeling supported, informed, and deeply connected, knowing they are part of a global network working tirelessly to improve the lives of those living with SCN8A. Photos by: Ryan Collerd www.ryancollerd.com A special thanks to our sponsors who made this event possible:
Platinum Sponsors Neurocine Biosciences and Praxis Precision Medicines Bronze Sponsor Lundbeck
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