In 2023, The Cute Syndrome Foundation helped SCN8A families move from surviving to thriving. We launched the Connor James Smith Patient Assistance Grant, expanded mental health and life coaching programs, and hosted in-person Cute Connections events in Missouri, Georgia, and Italy. Our first All-Abilities Virtual 5K and the 9th Annual SCN8A Gathering brought our community closer than ever.

​With over 500 support group members across 53 countries and new research funding through our SCN8A seed grant, we’re making meaningful progress. Thank you to our donors, volunteers, and partners for making it all possible.

Highlights

The Connor James Smith Patient Assistance Grant was launched to honor Connor’s legacy by easing financial burdens for SCN8A families and spreading joy through meaningful, family-centered support.
The Pitino family's Golf Fundraiser raised over $100,000, which helped fund travel grants for every family that applied for the 2023 Annual Gathering in Orlando, Florida​​.
The 2023 CUTIES Awards were presented to Dr. Scott Perry, Dr. Madeleine Oudin, and Shawn and Krista Smith for their significant contributions to the SCN8A community​​.

Volunteer Highlight

"I volunteer with TCSF because it helps me give back to a community that has given me so much. I have made true friends through volunteering and participating in the foundation’s programming. I love finding new ways to connect the community and let others see the bright, joyful life our kids have.”
​Nora Lyons
​Blake's Mom
The Cute Syndrome Foundation, in partnership with the American Epilepsy Society, awarded a seed grant to researchers at Tufts and MIT to advance SCN8A research through a new mouse model and ASO therapy development—work that holds deep personal significance for two of the collaborators, Dr. Madeleine Oudin and Dr. Chris Burge, whose daughter is affected by SCN8A epilepsy.
Our 2023 Meaningful Change Series and new Family & Researcher Roundtable Series provided valuable updates on SCN8A research and treatments while offering practical guidance on topics like caregiver restoration, travel tips, and genetic inheritance, all aimed at improving quality of life and long-term care for individuals with SCN8A.
The first All-Abilities Virtual 5K brought together over 110 participants from around the world to raise awareness, build community, and support SCN8A families through a fun, inclusive, and empowering event.