Recent Quest Articles
Learning to Love Your Wheels
Matt Curcio is a 27-year-old disability rights advocate who is living with a form of congenital myopathy. He regularly speaks and writes to increase awareness of the disability community’s needs and encourage individuals with disabilities to seek the support they need to pursue their dreams.Yet, even as he advocates for others, he has experienced his own struggles with asking for assistance. “Even at a young age, I’ve considered certain types of help as enablement for myself,” he says. As his disease progressed, he resisted using a mobility device for as long as possible. While Curcio can still walk short distances, he now relies on a mobility scooter outside his apartment. Transitioning to the scooter was a 12-year process.
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Get Ready to Roll
For many people with neuromuscular disease, there comes a point when walking becomes too difficult, and it’s time to start thinking about power mobility aids. This typically boils down to choosing between a mobility scooter and a power wheelchair.Given the progressive nature of neuromuscular disease — not to mention the financial investment involved with purchasing a power mobility aid — it’s important not only to select something that will meet your functional needs now and in the future but also to advocate for features that will provide you with the best long-term quality of life.
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Students of the World
When Joe Brown, who lives with Friedreich’s ataxia (FA), decided to participate in a study-abroad program in 2016, he knew he’d encounter challenges with accessibility, but he didn’t let that stop him.“On the last day, we were going to go dune bashing and have an evening meal in the desert. Bringing a power wheelchair to the desert is not feasible,” Brown says. “The program leaders asked me if I wanted to participate, since I would be without my wheelchair. I think my response was something like, ‘Strap me to the roof and put sand goggles on me if you have to!’”
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Chipping In
In 2017, PGA Tour golfer Morgan Hoffmann surprised the sports world by revealing that he had been diagnosed with facio-scapulohumeral muscular dystrophy (FSHD). Hoffmann made the announcement in an article for The Players’ Tribune, where he reflected on his career, his feelings about the diagnosis and his thoughts about the future. Recently, Quest followed up with Hoffmann.
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A Room of His Own
When Robbie Ivey, a 19-year-old soon-to-be college student from Iron River, Mich., and his mother, Carrie, first met Bill and Deb Weis, they had an idea but they didn’t know how to make it happen. They explained to the couple that they were looking for a way for Robbie to live more independently with Duchenne muscular dystrophy (DMD) by operating powered objects in his room, like the lights, TV and bed.
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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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