“The Cute Syndrome Foundation’s logo is a visual representation of what we stand for…it is a reference to the work that Esmé and I have done her entire life: living at the frontier between science and love, where I find hope best thrives.”
- Hillary Savoie, TCSF Founder and President

This May, The Cute Syndrome Foundation proudly celebrates 12 years of impact, dedication, and hope in the SCN8A community.

Over the past 12 years, we’ve remained steadfast in our mission to raise awareness of SCN8A, support families, and advance critical research that paves the way toward better treatments.

Since our founding, The Cute Syndrome Foundation has worked tirelessly to improve the quality of life for those living with SCN8A and their loved ones. Our Annual SCN8A Clinician, Researcher, and Family Gathering has become a cornerstone of that effort—bringing together scientists, doctors, and families to exchange knowledge, share stories, and learn from the community’s collective wisdom. These moments of connection and collaboration continue to drive meaningful progress.

Through partnerships with platforms like Citizen Health and our SCN8A Survey Series, we’ve helped build a robust foundation of patient-reported data—vital for understanding the course of SCN8A and developing targeted therapies.

And thanks to the unwavering generosity of our donors and supporters, we’ve proudly funded or co-funded over $500,000 in SCN8A research grants to date.

With your support, we’ve helped drive groundbreaking SCN8A research, championed the development of clinical trials, and built a strong and informed community. Join us this May as we celebrate the progress we've made and commit to pushing even further.

This month, we’re inviting you to be part of our $12 for 12 Years campaign. Your donation of just $12—or any amount you can give— will bring us closer to our goal of raising $12,000 to fund the next wave of programs, research grants, and initiatives.

Together, we can shape a brighter future for SCN8A warriors and their families.

$12 for 12 Years of The Cute Syndrome Foundation

Celebrating 12 years of impact, dedication, and hope in the SCN8A community