Chuck founded the United Mitochondrial Disease Foundation in 1996 after he and his wife Adrienne lost their daughter Gina at the age of 15 to mitochondrial disease. Chuck decided not to become a victim of the disease, but part of the cure. There was very little information about the disease. More critically, there were very few medical experts that heard about mitochondrial disease. UMDF began in the basement of Chuck’s Monroeville, PA home. Chuck was officially named UMDF’s executive Director and Chief Executive Officer in 2006. Under Chuck’s leadership, UMDF is now internationally recognized as the leading patient advocacy group for mitochondrial dysfunction and disease. His efforts to grow the UMDF has enabled the organization to fund more than $13 Million in research. Chuck retired from his role in June, 2018. He remains active, currently serving on the UMDF Board of Trustees as Chair Emeritus.