Recent Quest Articles
Students of the World
Editor's note: Shortly after the Summer 2018 issue of Quest was published, we learned that Joe Brown, who was featured on the cover, passed away. Joe graciously shared with Quest his story of studying abroad in the United Arab Emirates for the article "Students of the World." Individuals like Joe and the families who love them are at the heart of everything we do and why MDA is committed to transforming the lives of patients with muscular dystrophy, ALS, and other neuromuscular diseases. In this issue of Quest, we honor Joe's memory, spirit and passion for life.
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Meet MDA’s National Ambassadors
There was a palpable buzz in the air on March 12 at the kickoff of the 2018 MDA Clinical Conference in Arlington, Va. The announcement of the new MDA National Ambassador was one of the most-anticipated elements of the day, and the crowd was excited to learn that this year, MDA has not one but two National Ambassadors: 6-year-old Faith Fortenberry of Waco, Texas, and 17-year-old Justin Moy of Concord, Mass.
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Aging (Sort of) Gracefully with SMA
Recently, when a new homecare nurse arrived for training, Dad looked out the window and said, “She’s a young one.”“Well, Dad,” I replied, “We’re at the point where everybody’s young.” Despite my sarcasm, there was more than a little truth in this statement.Once I turned 45, evening nurses started putting me to bed at 11 p.m., after I had spent decades writing until the wee hours of the morning with the lights turned down and music blasting in my headphones, and then reading a few chapters of a book before turning in. I rebelled at the curfew, and I managed to sneak in the occasional all-nighter, but the next day I’d be running on fumes. This was my first indication that I’m not a young man anymore.
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The Great Accessible Outdoors
Jessica Albanese, 20, is passionate about the outdoors. The Delaware native, who lives with limb-girdle muscular dystrophy (LGMD), has navigated several of our country’s natural wonders in her power wheelchair.“Traveling is a passion of mine,” Albanese says. “I’ve hiked in the Great Smoky Mountains, I’ve seen the wild ponies at Assateague Island, and I’ve visited the alligators at Everglades National Park.”
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Voice Banking Offers the Promise of a Natural Voice
A strong voice was the foundation of Penny Abreo’s job as a first-grade reading teacher in Houma, La. But when she heard her words slurring and experienced unexplained fatigue and hand cramps, she and her husband, Aaron, sought medical advice.At 41, Penny learned she had ALS. Also known as Lou Gehrig’s disease or motor neuron disease, ALS affects nerve cells in the brain and spinal cord that control voluntary muscle movement such as speaking, walking and other life functions. As the cells stop working, so do the muscles used to do such activities.
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A Word from President & CEO Lynn O’Connor Vos
Since joining MDA as president and CEO in October, I’ve had the sincere pleasure of spending time with and learning from our families, leading clinical experts, renowned researchers, dedicated sponsors, and passionate MDA staff and volunteers. The progress we’re making together is unprecedented, and I know it is only the tip of the iceberg. Working together, I see incredible opportunities to push the limits of neuromuscular disease research and provide an even better health care experience for individuals and their families.
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Progress Now Winter 2018
In November, MDA announced 13 new MDA research and development grants, with a total funding commitment of $3.5 million, that are now supporting research projects around the world. The new projects cover a broad range of diseases in MDA’s program and are intended to impact the greater neuromuscular disease landscape.
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Startup Support
Once I was diagnosed with myotonic muscular dystrophy (DM), I sought a support group to learn more about my disease and meet others with the same diagnosis. Shortly after I began attending, the facilitator left the group and I was asked to take over her responsibilities. Talk about trial by fire.
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The Team Approach
Brendan is a curious, bright-eyed 7-year-old with a fun-loving attitude and a buoyant smile. He was diagnosed with Duchenne muscular dystrophy (DMD) when he was 23 months old. His mother, Colleen Labbadia, describes his diagnosis as long and heartbreaking but adds that there has been a bright spot. “Brendan is seen at the MDA Care Center at Nemours Children’s Hospital in Orlando, and we absolutely love it,” she says. “They have been our silver lining.”
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Creative Control
“I believe that if you are laughing, you are living.” This is 34-year-old Jared Aronson’s mantra. And he’s not particular about what deserves a good guffaw. He’ll laugh out loud over a clever play on words, a ridiculous Twitter post or even a temporary misfire as he masterminds yet another invention. Inventing is what fuels Aronson’s mojo. “I love problem-solving,” he says.
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MDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.
