Research Study Alert: Survey for Young Adults with Muscular Dystrophy

Researchers at the Hospital for Sick Children in Toronto, Canada are seeking young adults living with muscular dystrophy to participate in a survey about their interest in and experiences receiving genetic information. Participants will be required to complete a 10-15 minute online survey that collects largely quantitative data, as well as some open-ended responses. After completing . . .

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How Parents Can Help Kids Prepare for Adult Life

For 18 years, Linda VanVliet spent most of her non-working time taking care of her daughter, Shelby, who was diagnosed with congenital muscular dystrophy at 3 years old. (That diagnosis was later changed to titin myopathy.) Linda’s work as a school nurse also allowed her to step in quickly when Shelby needed care.  “For a . . .

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What You Need to Know About Finding and Visiting an MDA Care Center

Located at more than 150 of the top healthcare institutions across the United States, MDA Care Centers serve as the nexus for expert clinical care and medical research. Our Care Center Network offers tens of thousands of appointments each year for individuals living with muscular dystrophy, ALS, and other neuromuscular diseases. These appointments provide individuals . . .

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Tips for Setting Up an Accessible Home Office

When the COVID-19 pandemic emerged in March 2020, Matthew Lawson’s employer — like many others around the country — temporarily closed its doors and had team members go remote to prevent spread of the virus. Matthew, an IT manager for Abilities in Motion in Reading, Pennsylvania, soon realized that working from home would not be . . .

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Recognizing and Treating CMT in Kids

Like many middle-school kids, 11-year-old Callen, of Emmaus, Pennsylvania, has turned his mom, Jamie Moulthrop, into a chauffeur, she jokes. He participates in karate, baseball, hockey, and surfing, and he meets up often with friends at the pool and splashes around for hours.  Unlike the other kids around him, though, Callen has Charcot-Marie-Tooth disease (CMT), a . . .

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Inclusion in STEM: A Discussion with General Motors

According to the National Science Foundation, individuals living with a disability, such as neuromuscular disease, are underrepresented in the fields of science, technology, engineering, and math (STEM). Yet STEM-based careers are growing exponentially, and diversity is needed to drive innovation in these fields. As part of MDA’s mission to transform the lives of individuals living with neuromuscular . . .

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Help and Hope for Friedreich’s Ataxia

Bella, a 15-year-old in Fort Worth, Texas, loves jellyfish, horses, anime, Billie Eilish, reading sci-fi and fantasy, and making art. But living with Friedreich’s ataxia (FA) makes it hard for her to engage in some of her favorite activities. “I can draw and paint for only a few minutes before my hand starts to hurt, so I . . .

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October is National Disability Employment Awareness Month: What Does That Mean?

Sarah Jean Schwegel, who has spinal muscular atrophy (SMA), works as the Public Policy and Advocacy specialist at Paraquad in St. Louis, Mo. In 2015, Sarah graduated from Maryville University with a bachelor’s degree in Rehabilitation Services. In 2018, she graduated from Saint Louis University with a master’s in Public Administration. Before she started working . . .

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Who’s On Your MDA Care Center Team?: Speech-Language Pathologists

At more than 150 MDA Care Centers nationwide, kids and adults living with neuromuscular disease (NMD) have access to multidisciplinary care teams made up of different specialists who can coordinate in one place on an appointment day to optimize a complete care plan. Included on these teams are allied health professionals and social workers who . . .

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