Raising awareness about SCN8A-related disorders helps improve understanding, support research efforts, strengthen advocacy, and connect families around the world. Whether you are sharing your personal story, posting on social media, hosting a fundraiser, or educating your local community, every effort helps make SCN8A more visible.
SCN8A Awareness
International SCN8A Awareness Day
Join families, advocates, clinicians, researchers, and supporters around the world in recognizing International SCN8A Awareness Day each year on February 9th!
SCN8A was isolated in humans by Michael Hammer, PhD, a geneticist who found the gene in his own daughter, Shay, soon after her death in 2011.
To honor Shay and all of those with SCN8A, The Cute Syndrome Foundation helped launch International SCN8A Awareness Day on February 9th, Shay Hammer’s birthday.
Awareness day resources
Ways to Spread Awareness
Share your story
Sharing personal experiences can help others better understand the realities of living with SCN8A-related disorders while creating meaningful connections across your community. Whether speaking with schools, healthcare providers, workplaces, local organizations, or friends and family, sharing your story is a powerful way to increase awareness, build understanding, and help others learn about SCN8A.
Use social media
Social media is one of the most powerful ways to spread awareness and connect with others in the rare disease community. Share photos, videos, personal stories, milestones, educational information, or day-in-the-life moments to help others better understand SCN8A-related disorders. You can also help expand TCSF’s reach by liking, commenting on, and sharing our posts.
Wear awareness gear
T-shirts, bracelets, stickers, and other awareness items can help start conversations and show support for the SCN8A community.
Support research and advocacy
Participating in research studies, registries, fundraising efforts, and advocacy initiatives helps drive progress toward better treatments and improved care.
SCN8A Apparel
Wearing SCN8A apparel is a simple way to help spark conversations, show support for the community, and raise awareness about SCN8A-related disorders. The Cute Syndrome Foundation’s Bonfire store features a variety of awareness shirts and merchandise created to support community initiatives and awareness campaigns throughout the year.