In 2024, the Cute Syndrome Foundation continued to support and connect the global SCN8A community through family programs, education, and advocacy. With the help of our donors and partners, we provided nearly $40,000 in patient assistance grants, awarded $25,000 in travel grants, hosted educational webinars and support programs, and connected more than 545 families across 54 countries. We also celebrated our 10th Annual SCN8A Clinician, Researcher, and Family Gathering, bringing families, researchers, clinicians, and industry partners together to learn, collaborate, and build lasting connections.

​Throughout the year, we raised awareness, supported families in times of need, and helped ensure the SCN8A community had a voice in research and drug development. From funding family meetups and caregiver support programs to participating in conferences and advocacy efforts, every initiative was focused on improving the lives of individuals and families affected by SCN8A-related disorders.

Highlights

In 2024, the Connor James Smith Patient Assistance Grant awarded nearly $40,000 to 16 families, helping cover medical expenses, travel to specialists, adaptive equipment, quality-of-life needs, and end-of-life support.
The 10th Annual SCN8A Clinician, Researcher, and Family Gathering brought together more than 120 attendees from eight countries, creating opportunities for families, researchers, clinicians, and industry partners to connect, learn, and collaborate on the future of SCN8A care and treatment.
The 2024 CUTIES Awards were presented to Dr. Dennis Lal, Dr. Roberto Previtali, and Kelly Johnston for their significant contributions to the SCN8A community​​.

Annual Gathering Highlight

“Being in the presence of this community and having the most knowledgeable resources at our fingertips was invaluable. We left feeling like we have support and connection with those who truly understand and share our journey. We hope to return and stay connected year after year.”
Carlie
​Lucie's Mom
TCSF represented the SCN8A community at major research, epilepsy, and rare disease conferences, including the first SCN8A Research Roadmap meeting, helping ensure the patient and caregiver voice remains central to future research and treatment development.
Our Family Support Network grew to 545 families across 54 countries and 43 U.S. states. We connected families to resources, hosted support events and webinars, and continued building a global community where no family faces SCN8A alone.
From our Virtual Race, which raised more than $26,000, to the Throw a Strike for SCN8A fundraiser, which raised more than $85,000, supporters around the world turned connection and advocacy into meaningful impact for SCN8A families.