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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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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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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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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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