SCN8A The Cute Syndrome Foundation

SCN8A The Cute Syndrome Foundation If you or a loved one has received an SCN8A diagnosis, you are not alone! Send us a message or visit thecutesyndrome.com/join-our-scn8a-community to join.

The Cute Syndrome Foundation raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports the families around the world who are affected by SCN8A-related disorders. The Cute Syndrome is a 501(c)(3) public charity dedicated to funding research for and raising awareness of rare disorders like SCN8A Epilepsy and PCDH19 Epilepsy. Join our internation

al support group to connect with other families, stay up to date on clinical trial and research study information, and find caregiver support resources. This group is open to patients, parents, and direct caregivers of those with SCN8A mutations.

TCSF extends a heartfelt thank you to Krista and Shawn Smith for hosting the 4th Annual Race this past weekend in Virg...
06/17/2026

TCSF extends a heartfelt thank you to Krista and Shawn Smith for hosting the 4th Annual Race this past weekend in Virginia. Their event brought together more than 110 participants and raised over $8,000 for the Connor James Smith Patient Assistance Grant.

Established by Krista and Shawn in honor of their son Connor, the grant helps SCN8A families with medical needs, adaptive equipment, and quality-of-life expenses that are often not covered by insurance. TCSF is proud to partner with the Smith family to administer the grant, which has provided more than $140,000 in assistance to 42 families worldwide since its inception.

We are so grateful to everyone who participated, donated, volunteered, and helped honor Connor's legacy while making a meaningful difference for SCN8A families.💜

Please join us in celebrating Ryan’s accomplishment! “Today we celebrate Ryan’s completion of middle school. So proud of...
06/11/2026

Please join us in celebrating Ryan’s accomplishment!

“Today we celebrate Ryan’s completion of middle school. So proud of all his hard work, determination,
resiliency, and grit. Haverford High School, here he comes!!!”

Please join us in congratulating Bella! “Bella graduated from middle school. These past three years came with many chall...
06/09/2026

Please join us in congratulating Bella!

“Bella graduated from middle school. These past three years came with many challenges and celebrations. She continues to grow and mature. She will have access to some summer school to help prepare her for her new endeavor of high school.”

Planning summer travel with your SCN8A warrior but feeling overwhelmed? Our 2024 webinar recording, "How Do You Do It? T...
06/02/2026

Planning summer travel with your SCN8A warrior but feeling overwhelmed? Our 2024 webinar recording, "How Do You Do It? Traveling Tips and Tricks From SCN8A Caregivers," is packed with practical strategies, firsthand advice, and real-world tips from fellow SCN8A families to help make your next trip a little smoother. As summer travel season kicks off, now is the perfect time to revisit this valuable resource.

💜 Watch it here: https://youtu.be/NAwV8nFuyNo

Families, drop your best 2026 travel tips in the comments! 👇

As the school year draws to a close, we'd love to celebrate the achievements of our SCN8A community. Whether it was a f...
05/29/2026

As the school year draws to a close, we'd love to celebrate the achievements of our SCN8A community. Whether it was a first day of kindergarten, learning a new skill, making a new friend, attending a special event, winning an award, reaching an IEP goal, or graduating, every milestone deserves to be celebrated!

What was a special milestone, achievement, or favorite memory from this school year? Share in the comments!

Join The Cute Syndrome Foundation tomorrow for Transitioning Into Summer: Helping Kids Thrive at Home, a webinar designe...
05/27/2026

Join The Cute Syndrome Foundation tomorrow for Transitioning Into Summer: Helping Kids Thrive at Home, a webinar designed to help families feel more prepared and supported as they navigate the shift into summer routines. Featuring Teena Mehta Aziz, Registered Behavior Analyst (RBA), and three SCN8A parents, this conversation will offer practical tools and with real-life strategies to help make summer transitions smoother for neurodiverse children and young adults who thrive on routine.

🔗 Register: https://us02web.zoom.us/meeting/register/oC1UU7drRhmPFflEDOZ9VQ

Last week, Danielle Hayward, interim executive director, and Shelley Frappier, director of patient engagement and data m...
05/26/2026

Last week, Danielle Hayward, interim executive director, and Shelley Frappier, director of patient engagement and data management, attended the RARE Advocate Development (RAD) Brain Workshop on behalf of The Cute Syndrome Foundation. We’re incredibly grateful for the opportunity to learn from leading experts, researchers, and fellow rare disease advocates who are all working to accelerate therapies for rare neurological conditions. It was also wonderful to connect with our founder and board president, Hillary Savoie, PhD, of Neurvati Neurosciences, who delivered the Day 2 keynote with Bruce Leuchter, M.D., of Neurvati Neurosciences.

A special thank you to Global Genes, the Rare Epilepsy Network: REN, and Mahzi Therapeutics for organizing such a meaningful and collaborative event. It was an inspiring few days filled with learning, connection, and hope for the future of rare disease research and treatment.

Are you interested in connecting with other SCN8A families in your region? TCSF would love to help! The Cute Connections...
05/22/2026

Are you interested in connecting with other SCN8A families in your region? TCSF would love to help! The Cute Connections Grant Program allows SCN8A families to organize local meetups and social gatherings. Meetups can be as simple as a picnic in the park or as special as an aquarium visit, water park day, or adaptive activity. You organize the event, we'll help fund it!

💜Apply today at thecutesyndrome.com/cuteconnectionsgrant

The SCN8A community is at a loss as we share the passing of Levi, age 11, of Michigan (USA). Please keep his family in y...
05/22/2026

The SCN8A community is at a loss as we share the passing of Levi, age 11, of Michigan (USA). Please keep his family in your thoughts during this difficult time. As a community, we promise to always fight in your honor, Levi. 💜

The SCN8A community is at a loss as we share the passing of Amelia, age 6, of Arkansas (USA). Please keep her family in ...
05/21/2026

The SCN8A community is at a loss as we share the passing of Amelia, age 6, of Arkansas (USA). Please keep her family in your thoughts during this difficult time. As a community, we promise to always fight in your honor, Amelia. 💜

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