This season of giving, make the gift of hope and community for the SCN8A community. Your donation of $25 provides necessary supports for an SCN8A family.

As 2024 draws to a close, we are short of our fundraising goals. More than half of our financial support comes from individual donors like you, meaning every dollar you give truly makes an impact as we work to raise SCN8A awareness, fund research, and support SCN8A families around the world. Your donation of $25 will provide a year's worth education, resources, and social-emotional programming for a family impacted by SCN8A.

2024 has been a year of profound reflection and connection, as our community continues to grow and evolve. Through our Awareness Day hashtag, #IfYouOnlyKnew, we provided the world with a glimpse into the “real lives” of our families, fostering greater understanding and empathy.

During our anniversary celebration, we updated our logo to remove the word "epilepsy," recognizing the diversity within our community and our evolving understanding of SCN8A mutations. While it may seem like a subtle change, it is an important one. There are still many shared experiences across the SCN8A patient population, however, there is no one way to have SCN8A. This change allows us to honor the full breadth of the SCN8A experience.

This year also highlighted the need for more education and support in palliative care. In response, TCSF partnered with The Courageous Parents Network for our Meaningful Change Education Series. Together, under the theme Caregivers’ Crossroads: Navigating Tough Conversations and Tougher Choices, we created a safe space to address the difficult challenges our families face.

Additionally, TCSF collaborated with Costa and Ghaith from SCN8A Australia to present Festival of Mark Making, an event born in 2023 after the passing of their SCN8A child, Layla. Held in Sydney, Australia, this event showcased over 80 pieces of artwork created by SCN8A patients, siblings, and parents from 8 countries. This international initiative brought our community's voices to life through the power of art.

Layla: Festival of Mark Making

We closed out the year with our milestone 10th Annual SCN8A Clinician, Researcher, and Family Gathering. This year's milestone event, attended by over 115 guests from 6 countries, reflected on where we have been as an SCN8A community while looking ahead towards the future. We heard exciting clinical trial updates from industry partners, learned the latest advancements in SCN8A research and treatment, shared opportunities for families to further research, and most importantly, strengthened the bonds within our community. The Gathering is about more than just research or milestones—it’s about creating a space where families feel seen, supported, and empowered.

These programs and events have allowed us to confront the hardships we face while celebrating the incredible resilience and strength of our community. They are a powerful reminder of what we can achieve when we come together.

We invite you to make a gift today. Become part of our community as we work together to create a more promising tomorrow.

Give the Gift of Hope and Connection

By The Cute Syndrome Foundation

Give the Gift of Hope and Connection

Help us reach our 2024 goals and support SCN8A families through 2025 and beyond.