In 1997, the UMDF began in the basement of the Monroeville home of CEO/Executive Director Charles A. Mohan, Jr. Mohan and his wife, Adrienne, lost their daughter Gina to a form of Mitochondrial Disease called MELAS.   Gina Mohan was only 15 years old.

Over the course the next decade, Mohan and an active board of trustees, built the foundation into a recognized leader supporting those affected with mitochondrial disease and their families. UMDF represents thousands of members across the nation and around the world through volunteer participation in more than 60 chapters, groups and ambassadors. The Pittsburgh  based national office provides support, physician information as well as educational materials  world wide. Every 30 minutes, a child is born who will develop mitochondrial disease by his or her teenage years. Adults who are diagnosed often see their once active lifestyle progress to debilitation.  

The UMDF is the largest, non-governmental funder of mitochondrial scientific and medical research. Since 1997, the UMDF, through volunteers, has provided nearly $7 million in funding for research projects aimed at investigating a better diagnosis, treatment and a potential cure. Currently, there is no cure for mitochondrial disease, which is often difficult to diagnose and effectively treat.

Each year, the UMDF conducts a mitochondrial medicine symposium that brings families together with the best medical and scientific minds. The sole purpose of the gathering is for the scientific and medical community to learn the latest information available and for the families to network with each other and also hear about the latest advances.   The annual symposium is recognized by the National Institutes of Health and is becoming known as the world’s premier mitochondrial medical meeting.

“While we have come such a long way, there is still much to be done,” Mohan said. “Research over the last few years tells us that as many as 1 in every 200 people carry a mutation that could develop into a mitochondrial disease. We also now know that mitochondrial dysfunction is related to so many more common diseases such as Parkinson’s, Alzheimer’s, and Autism Spectrum Disorders. We all have mitochondria, so further study in mitochondrial medicine helps all of us, especially when it comes to areas of aging, diabetes and obesity”.Mohan accepted the ACMS award on behalf of all of those who are bravely battling mitochondrial disease and those who have lost their battle. “I am grateful to all of those who continue to spread 
our message and expand our mission. Despite struggles and adversity, they have chosen to become part of the cure and not a victim of the disease.”