UMDF’s 2020 Energy Award winner is Ryan Eberly from Gordonville, PA. Ryan first learned about UMDF shortly after he was diagnosed eight years ago with CPEO Plus with mitochondrial myopathy which was caused by a POLG mutation. He was looking for resources to help him understand what was happening in his world and found the UMDF website and social media.

Ryan became involved as an adult ambassador a little more than two years ago. He was able to help UMDF update the National Patient Resource Guide. That was no small feat. The resource guide is a 25 page document that helps patient families navigate the current resources available. “I updated and validated all of the resources in there,” Ryan said. He quickly moved onto the UMDF’s regional physicians list. “Myself and a few other volunteers went through and validated over 360 doctors on that list,” Ryan explained. “We went through the list and checked their information and websites. We then put that information into a regional document so anyone looking for a doctor who is interested in mitochondrial disease can use that list and see if there is a doctor close to them and can help them out”. Ryan’s background in IT has proven extremely helpful in coordinating all of this information into a format that is helpful to patient families.

Ryan says it is his most important role as an adult ambassador. He connects regularly with other adults who have CPEO and enjoys sharing with them resources that they may not know about. “When you are newly diagnosed, you don’t know where to begin,” Ryan said. “I hope I can connect with somebody and give them information about a new clinical trial or to just give them an idea that there are people out their working on a treatment for their disease.”