
Latest Editions
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Quest Issue 1, 2021
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Quest Issue 3, 2020
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Quest Issue 2, 2020
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Quest Issue 1, 2020
Recent Quest Articles

Opening Doors
Three mornings a week, Karen Toenniss, 50, grabs the car keys and dashes off to her part-time position as coordinator for the MDA ALS Care Center at Houston Methodist Hospital. Nestled in her heart, she carries her husband’s memory. “Every time I save someone even a little bit of frustration as they deal with ALS, it feels like Mike is with me,” she says.
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How Drugs Are Developed
Have you ever wondered what has to happen for the scientific community and pharmaceutical industry to develop a new drug and get it on the market, where physicians can prescribe it to treat a neuromuscular disease? Estimates vary, but it’s safe to say that, on average, out of 10,000 experimental compounds, one drug may make it to pharmacy shelves, and it will take at least 10 years and more than $1 billion to get it there.
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Take to the Skies
Every day, millions of people board flights bound for destinations across the United States and around the globe. Unfortunately, navigating sprawling airports and negotiating cramped planes makes traveling by air an uncomfortable experience for most passengers, and it can prove to be downright daunting for those with mobility challenges and other disabilities.
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Adaptive Is the New Black
This fall, New York Fashion Week opened with a bang: A runway show called Fashion Revolution presented numerous types of adaptive clothing worn by 30 models with disabilities. Organized by the Runway of Dreams Foundation — a nonprofit created by Mindy Scheier, whose son, Oliver, has a rare type of muscular dystrophy — the show highlighted the foundation’s goals of dispelling common fashion industry misconceptions about people with disabilities.
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Music Makes It Better
Whether it’s through headphones, blasting out of the van speakers or playing live right in front of me, music has been my constant source of happiness. After years of misdiagnoses, I was recently diagnosed with a form of congenital muscular dystrophy called collagen VI (with a bunch of letters and numbers after it that make me sound like a robot). Through the ups and downs of medical woes and lifestyle changes — from walking to using a wheelchair — the one thing that has consistently put a smile on my face is music in any way, shape or form.
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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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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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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.
Read More- Recent Quest Issues
- Quest Issue 1, 2021
- Quest Issue 3, 2020
- Quest Issue 2, 2020
- Quest Issue 1, 2020
- Quest Issue 4, 2019
- Quest Issue 3, 2019
- Quest Issue 2, 2019
- 2019 Conference Edition
- Quest Issue 1, 2019
- Quest Fall 2018
- Quest Summer 2018
- Quest Spring 2018
- Quest Winter 2018
- Quest Fall 2017
- Quest Summer 2017
- Quest Spring 2017
- Quest Winter 2017
- Quest Fall 2016
- Quest Summer 2016
- Quest Spring 2016
- Quest Winter 2016
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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.