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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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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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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Who’s On Your MDA Care Center Team?: Pediatric Social Workers

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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MDA Summer Camp’s New Adventure: Going Virtual

In March, as the novel coronavirus spread across the US, we at MDA realized it would be impossible to safely gather our community’s children and teens at MDA Summer Camps this year. But that didn’t mean we had to cancel camp, or its spirit. “We know how much MDA Summer Camp means to our community, . . .

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