Steve was diagnosed with Barth syndrome at the age of 31 and has been an active member of the community ever since. He has participated in advocacy efforts in Washington, D.C., attended the FDA Advisory Committee (AdComm) hearing, and regularly joins the adult Barth bi-weekly calls.

Steve holds a bachelor’s degree in business administration from Northern Kentucky University and has earned four certifications in Medical Coding and Billing. He works as a business analyst at St. Elizabeth Healthcare, where he focuses on documentation compliance within a value-based care program designed to improve outcomes for patients with complex chronic conditions.

Steve lives in Edgewood, Kentucky.