In recognition that people with muscular dystrophy are living longer than even recently thought possible, the Muscular Dystrophy Association (MDA) has named a young man as its latest National Goodwill Ambassador — marking the first time in the program’s 64-year history that a child hasn’t been selected for that role.
MDA’s 2016 National Goodwill Ambassador is Colorado State University (CSU) alumnus Joseph Akmakjian, 24, of Fort Collins, Colorado, who graduated in 2013 with a dual degree in communication studies and in journalism and media communication. Diagnosed with Spinal Muscular Atrophy (SMA) type 2 at age 15 months, Mr. Akmakjian’s parents were told he would likely not live past his 12th birthday. Last year, leaving his wheelchair behind, Mr. Akmakjian went skydiving to celebrate the special milestone of having doubled his life expectancy — and of overcoming his fear of heights and flying, shouting “YOLO!” (You only live once) as he dived. “My doctors … told my parents I wouldn’t go to high school or graduate from college. I’m grateful I’ve proved them wrong,” he says on the MDA website.
As its most visible spokesman, Mr. Akmakjian will work to deepen the MDA’s reach among millennials and to help raise awareness of the need for improved public policies and support for young adults with disabilities. Several previous MDA Goodwill Ambassadors have met with past U.S. presidents, including John F. Kennedy, Jimmy Carter, Ronald Reagan, and Bill Clinton.
“My dream is to inspire all types of people — not just people with muscular dystrophy or ALS — to live beyond their perceived limitations and achieve the success inside them,” says Mr. Akmakjian in a MDA release. “People often see my wheelchair and my physical limitations and ask me what I could do if I could walk. The truth is, we’re redefining what’s possible … with high hopes to inspire the world around us.”
Mr. Akmakjian made an appearance at a recent event at New York City’s Carnegie Hall, and on “The Today Show” on Jan. 29, as MDA rolled out its new “Live Unlimited” campaign. The campaign also commemorates the achievements of comedian and actor Jerry Lewis, the MDA’s longtime National Chairman.
Lewis, now 89, hosted the annual Labor Day MDA telethon in various forms from 1956 until 2010, with 2011 marking his last appearance as MDA National Chairman. The association held its last telethon in 2014, announcing on May 1, 2015, that the realities of contemporary television viewing and philanthropic giving had persuaded it to move beyond its historic broadcast telethon format.
“I’ve always dreamed of coming to New York, and this was the perfect opportunity to visit,” said Mr. Akmakjian. “I was really excited and thrilled to be a part of it.” He added in a CSU article by Jeff Dodge, “We’re proud to stand on the shoulders of our past, and Jerry’s been a big part of that.”
Founded by a prominent New York business leader in 1950, when public awareness and understanding of muscular dystrophy and related diseases were almost nonexistent, the MDA put a human face on its mission by calling on young people affected by these diseases to serve as National Goodwill Ambassadors, telling their personal stories and inspiring support.
MDA says that to date, the program has had 40 such ambassadors — young people who, along with their families, have traveled the U.S. to meet with sponsors, supporters, and luminaries (including presidents). They’ve also appeared on the telethons and other TV forums, such as “Larry King Live,” “Oprah,” “Today,” and “Good Morning America.” The MDA notes that its ambassadors have also appeared on more than 15 Parade magazine covers, and served as guests of honor at Walt Disney World, Disneyland, and the Rose Parade. Former MDA ambassadors have grown up to achieve distinction in life, transitioning into adulthood while earning advanced degrees and making their respective marks as authors, educators, bloggers, musicians, artists, and business professionals.
MDA is rolling out its new brand identity in 2016, with an updated logo, website, and the above-mentioned “Live Unlimited” campaign. The logo features warm iris blue and marigold colors, with a heart in the middle of the “D” in “MDA,” a symbol of the families at the very center of its mission. It also adds a new tagline, “For strength, independence and life,” underscoring its purpose. Mr. Akmakjian and subsequent MDA ambassadors will continue to play an essential role by motivating the public to help advance MDA causes through donations or volunteer action.
Spinal muscular atrophy (SMA type 2) is a progressive, potentially life-threatening disease affecting the nervous system and causing muscle weakness in different parts of the body, making many of the abilities most for granted, such as walking and hugging, difficult or impossible. SMA can also cause serious problems with breathing and swallowing, as well as weakness in back muscles that leads to progressive spinal curvature. Joe Akmakjian has used a power wheelchair since age 3. Today he lives independently, but retains strong ties to his family, including his dad (a surgeon), his mom (a registered nurse), and his two sisters.
During his time at CSU, Mr. Akmakjian was active in a variety of roles: as public relations coordinator for TedxCSU, a student marketing committee member for the CSU Career Center, and an event planning committee member for the Association of Student Activity Programming. He currently works as the director of marketing and client relations at a local Colorado pain management clinic.
In terms of personal pursuits, Mr. Akmakjian’s MDA profile notes that he enjoys swimming, nights out with friends, live music, dancing, festivals, and travel, and is always trying to grow as a person. The MDA credits him with having done much to prepare for his National Ambassador role, beginning with MDA involvement at age 6. Mr. Akmakjian attended MDA Summer Camp, and served as a State Goodwill Ambassador in 2007 and 2008. Of the importance of his camp experience, he said, “I started to see a life that was much larger, and developed hopes and dreams of living my life independently.”
Mr. Akmakjian embraces and embodies the MDA’s “Live Unlimited” philosophy: while not denying the physical challenges imposed by SMA, he keeps focused on moving beyond them as much as possible. “Can’t is a very debilitating word,” he says, “and I really try to keep it out of my mind as much as possible. For me, defying my limits isn’t about skydiving. 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.”
The MDA is announcing a new five-year plan to double its research spending on potential treatments and cures for muscular dystrophy, ALS, and related diseases. It notes in a release that scientists and drug developers are moving ever closer to lifesaving treatments, and it is particularly hopeful that new treatments for Duchenne muscular dystrophy — the most prevalent form of the disease — will be possible. Boosted by $200 million in MDA research investments over six decades, more new treatment options and clinical trials are expected in the next five years than became available or were undertaken in the previous five decades, the MDA reported.
The Muscular Dystrophy Association (MDA)
Colorado State University