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 . . .
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 . . .
It’s a new year and MDA’s commitment to transforming the lives of people living with neuromuscular disease through advocacy remains a top priority. We accomplished a lot last year, but we still have many vital goals to accomplish in 2022. We are excited to share a sneak peek at the advocacy team’s agenda for the . . .
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 . . .
Becker muscular dystrophy (BMD) is a rare genetic disorder involving mutations of the dystrophin gene. BMD exhibits similar signs and symptoms to another condition, Duchenne muscular dystrophy (DMD), which is caused by different mutations in the same gene. Although both conditions affect skeletal muscles used for movement, as well as heart muscles, they differ in . . .
When psychotherapist and disability advocate, Lauren Presutti, needs to recenter with a little self-care, she focuses on taking the time to tune into her feelings. Lauren, who lives with congenital muscular dystrophy (CMD), is an expert in the mental health field and recognizes the value of self-care. “Remember to acknowledge and express your feelings, whatever . . .
2021 was another challenging year for many, but once again, MDA’s grassroots advocates were relentless in ensuring lawmakers heard their voices. Throughout the year, our volunteers emailed, called, and met with important decision-makers urging them to act on vital public policy that will improve the lives of people living with neuromuscular disease and their families. . . .
Researchers at Boston Children’s Hospital/Brandeis University are seeking unaffected siblings of boys with Duchenne Muscular Dystrophy (DMD) to participate in a survey about their perspectives on disclosure and communication within the family. The information gained from this study will be used to guide parents on how to best communicate information about DMD to their family members. . . .