Allen, originally from the Chicago area, resided in six different states for over 25 years before settling in Central Florida with his two daughters. His involvement in Dravet Syndrome advocacy began when his younger daughter, Abigaile, experienced her first seizure at five months old. The family spent years pursuing an accurate diagnosis, ultimately identifying Dravet Syndrome in 2017 when Abigaile was 14.
In 2020, Allen transitioned from a career as a Project Manager to assume the role of full-time caregiver and advocate for Abigaile. He is responsible for overseeing her medical care and safety, facilitating her social participation, and coordinating the transition from pediatric to adult healthcare systems. Through these responsibilities, Allen has developed insight into the challenges faced by families affected by Dravet Syndrome and recognizes the importance of informed advocacy.
Allen emphasizes building connections in the community. He has organized a Walk for a Cure and attended several Dravet Syndrome Foundation conferences, fostering strong relationships throughout the Dravet community. Abigaile’s cheerful nature and optimistic outlook are evident in every aspect of her life from routine activities such as shopping to memorable adventures at Disney. Her excitement motivates Allen to continue his advocacy efforts and support families impacted by Dravet Syndrome. Balancing full-time caregiving, Allen runs to relieve stress and maintain his well-being, finding resilience and hope through movement as he works towards better outcomes for those affected by Dravet Syndrome.