Joe Akmakjian sure knows how to make an entrance.
It was about this time in 2015 that Joe literally leaped into our hearts when he jumped from a plane to celebrate his 24th birthday – and the doubling of his life expectancy.
“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.”
Since that milestone day, Joe has become the first adult selected to be MDA’s National Goodwill Ambassador. He has spent much of the last year traveling the country connecting with families, engaging with current and new sponsors and corporate partners, deepening MDA’s reach among millennials, and helping champion improved services for individuals living with neuromuscular diseases who are transitioning from childhood to adulthood.
He has overcome myriad challenges and defied many expectations on his way to becoming a spokesperson and leader in the neuromuscular advocacy space.
At just 15 months old, Joe was diagnosed with spinal muscular atrophy (SMA type 2), 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 and hugging. It can cause serious problems with breathing and swallowing as well as weakness in back muscles that can lead to progressive spinal curvature.
A graduate of Colorado State University in his hometown of Fort Collins, Joe 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’s triumphs and accomplishments illustrate why he is such an ideal embodiment of 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.
Long involved with MDA, Joe has had many experiences that have helped prepare him for the national ambassador role. When he was younger, Joe attended MDA Summer Camp and served as a State Goodwill 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.
Although he might be best known for his 24th birthday skydiving feat, Joe isn’t a daredevil (in fact, he says he has a healthy fear of heights and flying). And when asked what living unlimited means to him, Joe says it’s not about extreme sports or once-in-a-lifetime events.
“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, working in my first job and going places with friends independently. That’s what living unlimited means to me.”
