MDA’s Ambassadors are pivotal to our mission: empowering people living with muscular dystrophy, ALS, and related neuromuscular diseases to achieve their potential. We do that through care, research, and advocacy. Because the mission is big, we need big partners who can help evangelize what MDA is, what we do, and, most importantly, who we do it for. Enter, . . .
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 . . .
MDA Ambassadors are individuals affected by neuromuscular disease who share their story and help raise awareness, thus broadening the impact we make and bringing visibility to our mission. Beginning in the early 1950s, when public awareness and understanding of muscular dystrophy and related diseases were almost non-existent, MDA put a human face on its mission . . .
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 . . .
For more than 70 years, the Muscular Dystrophy Association (MDA) has been committed to empowering people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their potential. Through the decades, MDA has led the way through our innovations in care, research, and advocacy. This year, we go bigger. In an interview with . . .
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. . . .
On Dec. 17, the US Food and Drug Administration (FDA) granted approval to efgartigimod (Vyvgart) for the treatment of generalized myasthenia gravis (gMG) in adults who test positive for the anti-acetylcholine receptor (AChR) antibody. To date, Vyvgart is the second disease modifying drug approved to treat gMG. Vyvgart will be made available in the United States . . .