The Cute Syndrome Foundation’s 10th Annual SCN8A Clinician, Researcher, and Family Gathering was a powerful and inspiring event, bringing together families, researchers, and clinicians to foster connection, education, and hope. Held in Los Angeles, CA, this milestone gathering not only celebrated a decade of progress but also reinforced our collective commitment to improving the lives of those affected by SCN8A-related disorders.
Pre-Gathering Education and Connection
The event kicked off with an engaging Family Meet & Greet and Education Session, where families had the chance to connect with one another, learn about the weekend’s agenda, and hear from key leaders in the SCN8A community. Executive Director Kacie Craig and TCSF Founder Hillary Savoie set the stage by reflecting on the foundation’s journey and highlighting the incredible progress made over the years.
Attendees then participated in informative sessions including SCN8A 101 with Dr. Manoj Patel and Understanding Treatment Strategies for SCN8A-Related Disorders with Dr. Madeleine Oudin. This educational foundation allowed families to gain a deeper understanding of SCN8A and the ongoing research aimed at improving treatment options.
Highlights from the Gathering
The main event brought together over 120 dedicated attendees, including families, researchers, and industry partners for an evening of impactful discussions and presentations. Key highlights included:
- Family Perspectives: Andrew Bush and Olivier Frappier, siblings of SCN8A warriors, shared their heartfelt experiences, offering a unique insight into the journey of having a sibling with SCN8A. Additionally, Tonya Baboneau, mother of SCN8A warrior Natasha, provided a powerful and emotional perspective on the challenges and triumphs of caregiving, sharing her journey and offering insights into the daily realities, struggles, and unwavering love that come with being an SCN8A caregiver.
- Groundbreaking Research: Leading professionals presented on key SCN8A topics including natural history studies, sleep disorders, and emerging treatment strategies.
- Industry Insights: Dr. Brian Pfister from Praxis Precision Medicines delivered a compelling presentation on Relutrigine and its potential to revolutionize treatment for SCN8A.
- Honoring Our Angels: A moving tribute led by Ethan Ramirez, brother of SCN8A angel Will, honored the 71 SCN8A patients in our community who have passed, reminding us of the urgency of our mission.
2024 CUTIES Award Winners
Each year, the CUTIES Awards honor Champions for Understanding, Treating, Investigating, and Empowering those with SCN8A. This year’s recipients included:
- Family Award: Kelly Johnston, honored for her tireless advocacy and support within the SCN8A community.
- Clinician Award: Dr. Roberto Previtali, celebrated for his dedication to SCN8A research and clinical care, particularly in loss-of-function phenotypes.
- Researcher Award: Dr. Dennis Lal, recognized for his groundbreaking work in neurogenetics and his commitment to advancing personalized medicine for SCN8A patients.
Post-Gathering Education and Family Activities
- Comfort Dogs: Families started the day with the support of therapy dogs from Lend A Paw, providing comfort and companionship.
- Scientific and Industry Panels: Experts from Citizen Health, Praxis, Neurocrine, and TCSF’s own Hillary Savoie shared updates on research and clinical trials.
- Music Therapy & Video Games: Families engaged in interactive activities tailored to both children and parents to reinforce the importance of creativity and play in our community.
- Breakout Sessions: Specialized discussions covered topics such as anxiety management, behavioral challenges, and a dedicated dads’ support group.
- Storytelling Workshop: Hosted by Kara Ryska of The Special Needs Mom Podcast, this session empowered families to share their journeys and advocate for change.
A Decade of Progress, A Future of Hope
As the 10th Annual Gathering came to a close, Executive Director Kacie Craig emphasized the importance of continued collaboration, research, and community support. This event was not just about reflecting on the past 10 years; it was about propelling forward, fueled by the connections made and the knowledge shared.
To every family, clinician, researcher, and industry partner who attended, thank you for being part of this journey. Together, we will continue to push for advancements in treatment, care, and awareness, ensuring that every SCN8A warrior has the best chance at a brighter future.
Until next year, we move forward with hope, resilience, and an unwavering commitment to our community.
Photos by: Ryan Collerd
www.ryancollerd.com
A special thanks to our Platinum Sponsors who made this event possible:
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