Ben Schwartz doesn’t let Duchenne muscular dystrophy (DMD) stop him from enjoying the great outdoors. This 9-year-old from Des Moines, Iowa, has wheeled up massive sand dunes at Great Sand Dunes National Park and Preserve in Colorado, strolled paved trails at Guadalupe Mountains National Park in West Texas, and skied down a snowy slope at . . .
It’s been half a century since University of California, Los Angeles, computer science professor Jacques Vidal coined the term “brain-computer interface” (BCI) and produced the first peer-reviewed papers on the idea of interpreting brain signals with a computer. Today, BCI offers huge potential to improve the lives of millions of people around the world, including . . .
Since MDA’s founding in 1950, families have come to know MDA as a critical resource to help locate support and resources. Assistance obtaining durable medical equipment is one of the primary needs that our families encounter. MDA understands that navigating insurance and equipment needs can be difficult, and we are here to help. MDA’s National . . .
Claiming Success: A Q&A about achieving your goals As we use our collective voice to effect change in 2022, the Year of Independence is the perfect time to celebrate individuals in our MDA community who are shattering expectations and forging forward to achieve their goals. The personal story of the Honorable Robert Pipia, a judge in . . .
Building on MDA’s legacy of innovation in research, care, and fundraising, MDA brought families and the community together on March 17th for a Volunteer Tribute Reception in Studio A at the Grand Ole Opry House in Nashville, TN. Declared an official “Day of Recognition” by Tennessee Governor Bill Lee, the celebration honored three local champions with . . .
As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to share our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog details the different paths that individuals with neuromuscular disease have taken to reach their potential and the steps . . .
On April 28, the US Food and Drug Administration (FDA) granted approval to ravulizumab (Ultomiris) for the treatment of generalized myasthenia gravis (gMG) in adults who test positive for the anti-acetylcholine receptor (AChR) antibody. To date, Ultomiris is the third disease modifying drug approved to treat gMG. Ultomiris will be made available in the United . . .
Inclusion body myositis (IBM) is a rare, progressive muscle disease characterized by chronic muscle inflammation and weakness. It is estimated that approximately 20,000 people in the United States (US) have IBM, though the exact prevalence is unknown. IBM usually develops after age 50 and is more likely to affect men than women. The disease progresses . . .
Name almost any sport, and it probably can be adapted for various abilities. That includes baseball, skiing, surfing, rock climbing, football, hockey, rowing, and more. The way a sport is adapted varies based on the type of equipment used. For example, there are wheelchair versions of tennis, curling, basketball, and rugby. Other sports use specialized . . .
Drug companies are developing more therapies for rare disease patients — and doing it faster — than ever before. But when it comes to enrolling minorities in clinical trials, the US track record is lagging behind. That subject was the focus of a March 15 session during the 2022 MDA Clinical & Scientific Conference in . . .