On February 9, 2024, the global SCN8A community will come together to observe International SCN8A Awareness Day, an event dedicated to shedding light on SCN8A, a rare neurological disorder. This year’s theme, "If You Only Knew," aims to reveal the hidden challenges faced by individuals and families affected by SCN8A and to foster a deeper understanding and support network for them.

SCN8A mutations are linked to severe epilepsy and developmental issues, impacting numerous lives worldwide. Despite its significant impact, SCN8A remains under-recognized. This awareness day seeks to change that by educating the public, healthcare professionals, and policymakers about the disorder.

The SCN8A Awareness Day is more than an event; it's a vital platform for change. "If only more people knew about SCN8A, early diagnosis and effective treatment would be more attainable, and families would feel less isolated," says Kacie Craig, Executive Director of The Cute Syndrome Foundation. "This day is about turning empathy into action and ensuring that individuals living with SCN8A receive the recognition and support they deserve."

February 9th will mark what would have been the 28th birthday for Shay Hammer whose father Michael, at the time a population geneticist, was the first to isolate the SCN8A gene as the cause of his daughter’s struggle with epilepsy. Sadly, the discovery came weeks after Shay’s sudden and unexpected death in 2011 at 15 years old – the first documented case of SUDEP (Sudden Unexplained Death in Epilepsy) in a child with an SCN8A mutation.

We invite rare disease organizations, media outlets, healthcare professionals, educators, and the public to join us in this important cause. Together, we can shine a light on SCN8A and make a tangible difference in the lives of those affected.

For more information about International SCN8A Awareness Day and how to get involved, please visit scn8aawarenessday.net or contact Kacie Craig.