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 . . .

Read More

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 . . .

Read More

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 . . .

Read More

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 . . .

Read More

Creating a Network: How Hiring PCAs Gave Me Confidence and Independence, In College and Beyond

Josh Cueter, 22, from Troy, Michigan, is a 2020 graduate from Michigan State University.  At school he was a board member of the MSU Adaptive Sports & Recreation Club as well as MSU’s Council of Students with Disabilities.  After a semester internship with the Equal Employment Opportunity Commission in Washington, DC, Josh is currently working . . .

Read More

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, . . .

Read More

DMD Patients Invited to Participate in a Survey About Symptoms and Daily Life

Researchers at the University of Rochester in New York seek patients diagnosed with Duchenne muscular dystrophy (DMD) who are interested in helping to develop disease-specific patient-reported outcome measures for future clinical trials. This study will help to determine the most critical symptoms of children, young adults, and adult patients with DMD, and as a result, . . .

Read More