Starting in the early 1950’s, when public awareness and understanding of muscular dystrophy was almost non-existent, the Muscular Dystrophy Association created their National Goodwill Ambassador program. Since that time, over 40 individuals have helped bring attention to the fight against muscular dystrophy by sharing their stories of inspiration and hope. Joe Akmakjian is the current ambassador, and throughout 2017 he has worked to raise awareness for muscular dystrophy.
At just 15 months old, Joe was diagnosed with type 2 spinal muscular atrophy, a potentially life-threatening disease which causes muscle weakness in different parts of the body. Doctors told Joe’s parents that he would not live past the age of 12, but Joe proved them wrong. He graduated high school then earned a degree from Colorado State University in Journalism. Joe has worked in several roles including: public relations coordinator for TedxCSU, student marketing committee member for the CSU Career Center, and event planning committee member for the Association of Student Activity Programming. Currently, Joe runs his own consulting business specializing in public relations, marketing and creative communication strategies.
Joe enjoys several hobbies and activities including swimming, nights out with friends, live music, dancing, festivals and traveling. He welcomes new experiences and is always trying to grow as a person. One thing Joe tries to avoid is using the word “can’t”. He believes in the MDA philosophy of “Live Unlimited” and through this focuses on overcoming challenges and going beyond limitations whenever possible.
Today, there are also state ambassadors who work with local legislature and organizations to help raise awareness in their communities. Many of the young adults who become ambassadors attended MDA summer camps as children. With almost 75 MDA summer camp locations across the country, children living with muscle-debilitating diseases have the opportunity to spend “the best week of the year” playing and living life beyond their limitations. During the week, they’re free to enjoy adventures like horseback riding, swimming and fishing, develop lifelong friendships, and build self-confidence and independence.
To learn more about the MDA you can visit their website www.mda.org