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Making the Workplace Accessible

When Josh Moser transitioned from college to a career 10 years ago, having Duchenne muscular dystrophy (DMD) was a concern he wasn’t quite sure how to handle. He felt nervous talking about his needs, he recalls, worried that it might sabotage his job prospects. Fortunately, the financial services firm where he was temping appreciated his work and asked him to apply for a full-time position as a processing associate. After he accepted the offer, the company worked with him to make sure he could perform his job duties effectively.

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Be Prepared

When a medical emergency occurs — and the patient is a person with a neuromuscular disease — it’s not just getting to the emergency department (ED) quickly that’s critical. It’s also critical to ensure the ED staff understands the patient’s particular needs.“Many emergency department physicians have a limited background in neuromuscular disease,” states Lisa Wolfe, M.D., associate professor of medicine in the Division of Pulmonary Critical Care and Sleep Medicine at the MDA Care Center at Northwestern University in Chicago. Unfortunately, many people don’t discover this potential problem until they’ve arrived for emergency care.

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News on LEMS Treatment and Research

In Lambert-Eaton myasthenic syndrome (LEMS), the immune system attacks the connection between nerve and muscle — the neuromuscular junction — and interferes with the ability of nerve cells to send signals to muscle cells.Specifically, the attack targets the calcium channels on nerve endings that are required to trigger the release of acetylcholine, a chemical messenger that triggers muscle contraction. With fewer calcium channels, the nerve endings release less acetylcholine. With low levels of acetylcholine, muscles do not contract normally, resulting in muscle weakness.

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The Independent Mindset

After Sandra Young was diagnosed with late-onset Pompe disease at age 52, she thought her life would change and she would no longer be able to do the things she enjoyed.“While my friends and family were living their lives, I was sitting on the sidelines missing out,” Young says. “It took me a year to realize I am the same person as before. I hit a stumble in the road, and it shouldn’t stop me from doing the things I want to do. I woke up and thought, ‘Girl, you can still do it, you just have to do it differently.’”

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Dollars for Scholars

The cost of higher education has soared over the past two decades. According to U.S. News & World Report, in-state tuition and fees at public universities have increased 243 percent, while they have jumped 168 percent at private institutions. For many prospective college students, winning scholarships is key to making education more affordable. The trick is thorough research. There are lots of scholarships out there, many of which are earmarked for individuals with particular backgrounds, students applying to particular schools, students pursuing particular fields of study and myriad other considerations. The best advice for students seeking financial assistance? Think broadly about how your situation applies to scholarships’ requirements and, above all, don’t be afraid to apply.    

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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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