Beginning in the early 1950s, when public awareness and understanding of muscular dystrophy and related diseases were almost non-existent, MDA put a human face on its mission by calling upon young people affected by these diseases to serve as National Goodwill Ambassadors, telling their personal stories and inspiring support of MDA.
To date, the program has had 40 such ambassadors. These young people, along with their families, have traveled the nation to meet with sponsors, supporters and luminaries including U.S. Presidents such as John F. Kennedy and Ronald Reagan. They’ve also appeared on MDA’s Telethons — often with longtime telethon host Jerry Lewis — and other forums such as “Larry King Live,” “Oprah,” “Today,” and “Good Morning America." Ambassadors have graced more than 15 covers of Parade magazine and served as guests of honor at Walt Disney World, Disneyland and the Rose Parade.
Today, MDA ambassadors continue to play an essential role in motivating millions to help MDA through donations or volunteer action. Former ambassadors have grown up to achieve distinction, transitioning into adulthood while earning advanced degrees and making their marks as authors, educators, bloggers, musicians, artists and successful business professionals. Their distinctive voices continue to ring out, advocating with great passion and intelligence to raise standards of independence, research and care for all members of the MDA family and for the disability community in general.
“My dream is to inspire all types of people to live beyond their perceived limitations and achieve the success inside them.”
- Joe Akmakjian
Home and Family
Joe is a Colorado native. He lives independently in his hometown of Fort Collins while maintaining close ties with his family.
Joe was diagnosed with spinal muscular atrophy (type 2 SMA) when he was 15 months old. SMA is a progressive, potentially life-threatening disease affecting the nervous system and causing muscle weakness in different parts of the body. SMA can steal abilities many of us take for granted such as walking, hugging and shaking hands. It can cause serious problems with breathing and swallowing as well as weakness in back muscles that can lead to progressive spinal curvature.
Education & Career
In 2013, Joe graduated from Colorado State University with a Bachelor of Arts degree in journalism and technical communication with a concentration in public relations, and a double major in speech and communication studies. During his time at CSU, Joe was active in a variety of roles: 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 swimming, nights out with friends, live music, dancing, festivals and traveling. He welcomes new experiences and is always trying to grow as a person. “He’s full of more joy and ambition and drive for life than anyone else I know,” says his close friend, Hannah Toole.
Joe has had many experiences that have helped prepare him for the national ambassador role, as he has been involved with MDA since he was 6 years old. Joe attended MDA Summer Camp and served as a State Ambassador in 2007 and 2008. He credits MDA Summer Camp with broadening his personal outlook on life. “I started to see a life that was much larger, and developed hopes and dreams of living my life independently,” Joe says.
Joe recalls his very early years: “My doctors told me I wouldn’t live past 12 years old. They told my parents I wouldn’t go to high school or graduate from college. I’m grateful I’ve proved them wrong.”
In 2015, to celebrate his 24th birthday and doubling his original life expectancy, he went skydiving with friends, despite his fear of heights and flying. Joe was securely strapped to his skydiving instructor when the jump occurred. As he got ready to feel the wind on his face at 120 miles per hour, he overcame his fear by shouting “YOLO!” (You only live once.)
Joe embraces and embodies MDA’s “Live Unlimited” philosophy: While not denying the physical challenges imposed by SMA, he puts the focus on going beyond limitations whenever possible. “Can’t is a very debilitating word, and I really try to keep it out of my mind as much as possible,” he says.
“For me, defying my limits isn’t about skydiving,” he says. “It’s actually the everyday, simple things — like getting around town on my own, getting dressed in the morning, developing my career and goingn places with friends independently. That’s what living unlimited means to me.”
MDA National Ambassador Role
Decades ago, MDA put a human face on its mission by calling upon young people affected by muscular dystrophy and related life-threatening diseases to serve as National Ambassadors, sharing their personal stories and inspiring support for MDA’s mission.
As MDA's most visible spokesman, Joe has helped forge better connections between families, engage with current and new partners, deepen MDA's reach among millenials, and help champion improved services for individuals living with neuromuscular diseases who are transitioning from childhood to adulthood.
In addition, he has enthusiastically supported our revitalized MDA brand, our Live Unlimited campaign and bold mission plan, and he will be fully engaged in our continued efforts to discuss our progress with partners and supporters across the country. This year, Joe will expand his online influence, help strengthen our state and local ambassador program, and advocate for the MDA community in new, impactful ways.
"With the advances we've made in scientific research and medical management, people with muscular dystrophy are living longer than ever before," Akmakjian said.
Visit Joe’s Facebook page here.