Did you know that according to a recent MDA survey, only 21% of adults living with neuromuscular disease are working part or full-time? Many individuals with disabilities have a desire to work but face employment hurdles, including the lack of wraparound support services, inaccessible workplaces, discriminatory wages, and a potential loss of Supplemental Security Income . . .
Researchers at Newcastle University are seeking adults living with general pain or with myotonic dystrophy (DM) to participate in a survey to learn about the ability of individuals affected by these conditions to self-manage pain and to determine how this affects overall well-being. This study involves a 15-20 minute online survey. To be eligible, individuals must . . .
At Daytona International Speedway, if you see a silver wheelchair-accessible minivan flash by outside the stadium, it’s shuttling people who need assistance getting around the expansive venue. Philip James “PJ” Nicholoff would be happy knowing that his family donated his beloved van to the speedway, and its back windows display signage honoring him. A big . . .
Duchenne muscular dystrophy (DMD) belongs to a group of rare genetic disorders, known as dystrophinopathies, that are caused by mutations of the dystrophin gene. DMD is characterized by progressive degeneration and weakness of the body’s voluntary muscles, primarily the skeletal muscles that control movement. In later stages, the heart and respiratory muscles may also be . . .
When Elisa Ramos, a 28-year-old Central Valley, California, resident with myasthenia gravis (MG), walks into a restaurant with her partner, she’s keenly aware of the looks. “I already face discrimination and displacement because of my disability,” she says. “My scars, medical equipment, and dragging feet get attention, and being with a female partner amplifies that.” . . .
In recognition of International Day of Women and Girls in Science, the Muscular Dystrophy Association (MDA) is honored and excited to highlight the career and accomplishments of Dr. Angela Lek, PhD. International Women and Girls in Science Day, February 11, endeavors to acknowledge and celebrate the invaluable role that women and girls play in accelerating . . .
The individuals and families in our neuromuscular community have always been the heart of MDA’s mission. MDA’s Family Support Team executes a variety of programs that empower individuals and families on their journeys. As another year ends, and the new year is ramping up, the Family Support Team is proud to reflect on services provided . . .
As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to kick off our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog will detail the different paths that individuals with neuromuscular disease have taken to reach their potential and . . .
For the first six months following her amyotrophic lateral sclerosis (ALS) diagnosis, Valerie Geerer’s instinct was to keep the news to herself. “My husband and close family and friends knew, but I didn’t feel comfortable sharing it with co-workers or acquaintances,” she says. Then she met Dora Sementilli. Like Valerie, Dora was in her 50s . . .
It’s no secret that alcohol consumption can have an impact on one’s health. Some studies have shown benefits for the heart and circulatory system from moderate drinking. On the other hand, alcohol is known to depress the central nervous system and can destroy brain cells. Excessive drinking over a prolonged period of time can cause . . .