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February 9, 2024, marked an important occasion for the global community, particularly for those whose lives have been touched by SCN8A, a rare disorder that often operates in the shadows. International SCN8A Awareness Day, observed under this year’s theme #IfYouOnlyKnew, served as a poignant reminder of the challenges faced by individuals affected by this condition, which impacts less than 1,000 people worldwide. This day is not just about raising awareness; it's about fostering understanding, empathy, and support for those navigating the complexities of SCN8A. At the core of this movement lies a profoundly personal narrative, one that begins with Michael Hammer, PhD, a geneticist and father. Dr. Hammer's journey into the realm of SCN8A originated from his own daughter, Shay. Sadly, SCN8A claimed Shay's life in 2011. However, from this devastating loss arose a dedication to comprehending and confronting this uncommon disorder, illuminating a path forward amidst the darkness. In honoring Shay's memory and the countless others affected by SCN8A, The Cute Syndrome Foundation (TCSF) played a pivotal role in starting the annual International SCN8A Awareness Day, alongside Ajude o Rafa and Wishes for Elliott, in 2017. It's a day not just to mourn losses, but to celebrate lives, resilience, and the enduring spirit of those impacted by SCN8A. February 9th holds special significance as it marks Shay Hammer's birthday—a fitting tribute to a life that continues to inspire change and advocacy. SCN8A is not merely a medical condition; it's a multifaceted challenge that extends beyond the realms of physical health. It can manifest in severe epilepsy, developmental delays, and a myriad of other medical complexities and behavior challenges. Yet, amidst the struggles, there is a community united by a common purpose—to shed light on SCN8A, to amplify the voices of those affected, and to advocate for greater support, resources, treatments, and research. #IfYouOnlyKnew encapsulates the essence of International SCN8A Awareness Day—a call to action, a plea for understanding, and an invitation to stand in solidarity with those confronting this rare disorder. If you only knew the daily battles fought, the triumphs celebrated, and the resilience exhibited by individuals living with SCN8A, perhaps you'd see the world through a different lens—one characterized by empathy, compassion, and unwavering support. "There's something that people that don't live in this world don't understand—can't understand—and that is the absolute perfection of our children."—Hillary Savoie, TCSF Founder and President This year's awareness day theme brought attention to the profound struggles faced by caregivers—individuals grappling with complex decisions regarding their children's care, navigating insurmountable grief, and contemplating what quality of life means for their families. In response, TCSF has taken proactive steps to provide educational series and family support centered around these difficult topics in 2024. It's a conversation that weighs heavily on the minds of many, and TCSF aims to provide a platform where caregivers can openly discuss their experiences, share insights, and find solace in community support.  #IfYouOnlyKnew..."The pain and the joy Nora brings to our lives. It's a dichotomy. We've seen our little girl suffer more than any little person should and we've all suffered immense pain. But she's still brought light, beauty, joy and unconditional love to our lives. She's taught us what's most important and we've learnt what it really means to love unconditionally, without expecting anything in return. Our hearts are broken and bigger and fuller, all at once."—Grace, Parent of Nora, Ireland As we reflect on International SCN8A Awareness Day and its significance, let us reaffirm our commitment to fostering a world where individuals affected by rare disorders like SCN8A are not defined by their medical conditions, but by their strength, courage, and humanity. Together, let's illuminate the path towards greater awareness, understanding, and inclusion for all. It's a journey marked by challenges, but also by moments of profound connection and hope.
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