Recent Quest Articles
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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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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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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Pushing the Limit
After running three marathons with MDA Team Momentum since 2014, Will Farr was ready for a bigger challenge. Farr had previously pushed his 14-year-old son, Owen, who has Duchenne muscular dystrophy (DMD), in a racing chair for a 4-mile race as part of a charitable initiative of the men’s workout group F3 Nation. In a video made to promote the initiative, Owen was asked if he thought his dad would push him in a marathon. Of course, Owen’s answer was “Yes,” and Farr decided to prove Owen right. In October, at the 2017 Marine Corps Marathon in Washington, D.C., Farr pushed Owen for the entire 26.2-mile race.
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Walking Strong
For Rene Runions, a 19-year-old sophomore at Saint Louis University (SLU), MDA has been a part of her life since she was diagnosed with Charcot- Marie-Tooth disease (CMT) in the sixth grade. She started attending MDA Summer Camp in her home state of Illinois and later was named the Illinois State Ambassador.
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Designing Her Dreams
Allie Williams, a 25-year-old who lives with Charcot-Marie-Tooth (CMT) disease, earned her master’s degree in biomedical engineering from Texas A&M University in 2017. Williams always knew she wanted to help individuals with disabilities, but it wasn’t until her junior year of high school that she found the right fit.
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Productive Partnership
Since first partnering with MDA in 1985, Acosta, a full-service sales and marketing company focused on packaged consumer goods, has raised more than $82 million for MDA’s mission. Acosta’s staff support MDA through fundraising events, marketing promotions and even volunteering at MDA Summer Camps. Here are just some of the ways Acosta offices across the country have showed their support for MDA:
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The Power of Role Models
In recent months, I’ve experienced a noticeable decline in my arm and leg strength. My limbs feel heavy. It seems like they succumb a little bit more to gravity each day. One night, I tried to roll over in bed, and it took me six attempts — six! — to succeed. By the time I finally flipped over, I felt like I had just gone to the gym.
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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.
