Recent Quest Articles
Pursuing Your Passion
When he was younger, Andrew Baker, a 21-year-old junior at Brandeis University in Waltham, Mass., who has Charcot-Marie-Tooth disease (CMT), knew he wanted to compete. He tried baseball and soccer, but found that with his CMT he was unable to be a competitive player. Serendipitously, he was recommended swimming as a form of physical therapy, and with some encouragement from his younger sister who also has CMT, he decided to try swimming competitively.
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From Apples to Advocacy
For Dayniah Manderson, a teacher, writer and mother with spinal muscular atrophy (SMA) from New York City, being in a pageant at age 37 wasn’t really on her radar. But when she received a nomination for Ms. Wheelchair NY 2017, she was taken aback — at first.“Initially, I was disinterested because I didn’t know what the world of pageantry is about,” she says. “But after someone contacted me and explained it to me, it became more appealing. They had to do a little convincing, but ultimately I appreciate them pushing me to do it.”
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A Strong Tradition
Like many kids, Vince Van Binsbergen, 26, wanted to be a fire fighter when he grew up. “I used to run around with a fake EMT bag,” says the California native, laughing.Van Binsbergen never outgrew that dream, and at age 15, he enrolled in a fire explorer program, where he learned what being a fire fighter is all about. After high school, he moved to Colorado and served as a volunteer fire fighter for the Elk Creek fire department while working as an EMT. After about three years, a paid position opened up, and he’s been working for the Elk Creek Fire Department Local 4710 ever since.
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CITGO Gives Back
At the 2017 MDA Scientific Conference in Arlington, Va., on March 20, MDA presented CITGO Petroleum Corporation Assistant Vice President of Supply and Marketing Alan Flagg with a special research award to honor CITGO’s unprecedented contribution to MDA’s research program over the years. In the past 30 years, CITGO has donated more than $200 million to MDA to support the search for new treatments and cures for neuromuscular diseases.
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Surviving and Thriving in College
College is a blast, but it can come with a pile of challenges the size of a mountain. Just look at the hundreds of articles there are advising students on how to conquer stress, manage time and deal with that one professor who may as well have been stripped from an ‘80s movie. College can be the best — and the most draining — time in a person’s life.
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Running the Country
MDA Team Momentum participates in a dozen (and counting) marathon and half-marathon events every year. These events feature hundreds of runners and walkers who raise money for MDA, and they take place all across the United States, from San Diego to Chicago to Boston.Here are some of the groups of runners who have made an impact fundraising for and raising awareness of MDA.
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Accessible Living: The Comforts of Home
When Brenda Allen’s son, Tyler, was diagnosed with Duchenne muscular dystrophy (DMD), the family had just closed on a home. Although Tyler was only 3, they immediately knew that the house wouldn’t work. It lacked many accessible features, like a bedroom on the first floor and a large bathroom to accommodate a wheelchair.
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Accessible Living: Lease on Life
A few years ago, Michele Boardman was ready to move into her first apartment. But Boardman, 30, who lives with limb-girdle muscular dystrophy (LGMD), had several factors to consider besides rent and location. She had to find a place that would accommodate the modifications she needed: a front door with a number-pad lock, doors removed from her bedroom and bathroom for easy wheelchair access, under-sink cabinet doors removed for knee space and a barrier-free shower.
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Smiles for Miles
When Jon Burcaw attended his first MDA Ride for Life in 1999 with his son Shane, who has spinal muscular atrophy (SMA), they were simply there to support the Harley-Davidson riders raising money and awareness for MDA. Little did he know that by 2007 he would be known as “Smilin’ Jon” and have his own Harley with a special sidecar that makes entering and exiting easier for individuals with disabilities. “[My first Ride for Life] made me smile, and I’ve been pretty much stuck that way ever since,” Jon says.
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Journeys of a Lifetime
Carden Wyckoff, a 24-year-old professional with facioscapulohumeral muscular dystrophy (FSHD), went on her first piggyback adventure in 2015 when her brother Spencer carried her on his back through the Reebok Spartan Sprint, a tough three-mile obstacle course. After their second Spartan race in 2016 — and after Spencer appeared on national TV on “American Ninja Warrior” — Carden and Spencer were approached by a friend who had co-founded the travel company Vestigo.
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