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 . . .
When the COVID-19 pandemic began, much of the healthcare system shifted from primarily face-to-face visits to a wider acceptance of telehealth, or virtual appointments using computers, tablets, or smartphones. Health insurers quickly pivoted to covering virtual visits, as the pandemic required social distancing. And while the pandemic will, eventually, wind down, healthcare experts believe greater . . .
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 . . .
Open enrollment — the period each year when people are eligible to purchase new insurance or make changes to their existing insurance plans — is upon us. Buying health insurance can be confusing, but it’s critically important that everyone in the neuromuscular community have coverage. We are pleased to share some FAQs below to help . . .
When Stephanie and Wayne Donato received the diagnosis of Duchenne muscular dystrophy (DMD) for their son Maximus, who was 4 at the time, in 2017, “we were completely blindsided,” Stephanie says. The couple quickly realized there were a lot of people they needed to tell, and they started with their own family. The Donatos also . . .
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 . . .
It can be overwhelming for educators to learn the various challenges associated with neuromuscular diseases and to take those considerations into the classroom. The good news is that these students also come with their own unique set of deep strengths, and educators’ role in encouraging, supporting, and motivating them draws on many of the skills . . .
Broken wheelchairs. Inaccessible seating. Hard to navigate aircraft. For too many in the neuromuscular community, traveling by air is not accessible. We sat down with Paul Melmeyer, MDA’s VP of Public Policy and Advocacy to hear about his recent appointment to the Air Carrier Access Act Advisory Committee and the Association’s work on accessible air . . .
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, . . .