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 . . .
With age often comes the maturity and grace to accept the world and oneself. That’s a good thing, because it takes every bit of that maturity to differentiate the aging process from the progression of a neuromuscular disease. Neuromuscular disease comes with certain physical limitations that can also look like aging — loss of strength, . . .
More than one-third of adults in the United States fail to get the seven to nine hours of sleep they need, reports the National Sleep Foundation. Children and teens require even more sleep, which too many also miss out on. Getting quality sleep can be challenging for people with neuromuscular disorders. However, with the right . . .
For more than a year we heard these messages: Wash your hands. Wear a mask. Stay six feet apart. Now, the Centers for Disease Control and Prevention (CDC) says people who are fully vaccinated can resume many of the activities they did before the pandemic. The CDC recommends masks indoors in public for everyone in locales where . . .
After years of denial, it was the stairs to his second-floor college apartment that forced Chris Anselmo to finally face his limb-girdle muscular dystrophy (LGMD) in 2009. “I remember moving in, trying to carry things like my desk chair to the top of the stairs, and just feeling completely weak and exhausted by the time I reached . . .
When Kristine Welker’s son was young, he wanted to be as involved in sports as everyone else in the family — and that meant a high level of activity, from biking and boating to organized sports and running. “Our son is our third child and by the time he came along, we figured he’d follow . . .
MDA Care Specialists are dedicated to assisting families who visit MDA Care Centers by providing the right resources, answering questions, and helping navigate processes. After your visit to an MDA Care Center, you can expect an MDA Care Specialist to follow up with you. The call will come from (800) 572-1717. Here at MDA, we . . .
When MDA launched the MDA National Connections program last year, there was no doubt it would be invaluable for fostering relationships, especially during the pandemic. It didn’t take long to see that the MDA community was eager to build connections, with interest coming from families and people of all ages, from parents of children to individuals . . .
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 . . .
Beginning in the early 1950s, when public awareness and understanding of muscular dystrophy and related neuromuscular diseases were extremely limited, MDA began calling upon individuals living with these diseases to serve as National Ambassadors, telling their personal stories and inspiring support of MDA. More than 40 MDA National Ambassadors, including children and adults, have met U.S. . . .