As appearing in SOURCE
This summer Joseph Akmakjian, a CSU alumnus living with muscular dystrophy, celebrated a birthday he never thought he would have by doing something he never thought he would do: skydive. But for Akmakjian this was more than just a birthday outing; it was a chance to raise awareness about disability.
“I wanted to use this opportunity to demonstrate that people with disabilities have the same wants, desires and needs as anyone else,” said Akmakjian. “We can still have a normal life—and a pretty good one, as well.”
When he was 15 months old, Akmakjian was diagnosed with a form of muscular dystrophy called spinal muscular atrophy, a disease that causes progressive weakness and loss of muscle mass. At the time of his diagnosis, doctors said he would not live past the age of 12, but on July 28 he celebrated his 24th birthday—officially doubling his original life expectancy.
Three days before this milestone birthday, Akmakjian and 14 of his friends made the two-and-a-half hour drive to Out of the Blue Skydiving in Calhan, Colorado. The employees at OOTB Skydiving took special care to ensure no injuries were suffered during the tandem jump. Once his harness and neck brace were secured, Akmakjian was ready to fly.
“It was a surreal experience,” said Akmakjian. “Once we were standing at the edge of the plane, I knew there was no turning back. I just kept telling myself, ‘You only have 45 seconds to get the best out of this before it’s over.’ And so I did,” said Akmakjian.
Akmakjian launched a blog called “If I could walk, I would twerk” in the days following his birthday. In his first post, “Learning How to YOLO,” Akmakjian shared his experiences growing up with MD, along with a play-by-play of his skydiving trip. He hopes to continue to use the blog to build an environment where disability is normalized.
Hope through research
Akmakjian has been closely involved with the Muscular Dystrophy Association since he was 6 years old. Today he volunteers as a brand ambassador, traveling around the country to educate sponsors about the importance of funding muscular dystrophy research and the success such research has shown.
“People weren’t living this long with muscular dystrophy 20 years ago, so it’s important to educate people, especially sponsors, about this new generation,” said Akmakjian. “We are dipping our toes into new water with this research, and it’s allowing people to look through a different lens to see what adults living with this disease need.”
Akmakjian graduated from CSU in 2013 with dual bachelor’s degrees in journalism and communications with a concentration in public relations. During his time at CSU, Akmakjian was involved with the Ram Leadership Team through Associated Students of Colorado State University and RamEvents, which was formerly known as ASAP. He was also the PR coordinator for TEDxCSU. He hopes to use his degree to pursue a career as a motivational speaker and also plans to continue sharing his story through his work with the MDA.
“My passion is human connection, and through the MDA I have found a way to express that passion,” said Akmakjian. “I’m very comfortable talking about my disability. The only way we can move on is for people to be willing ask questions and learn. I want others to understand that people with MD are here and here to stay.”