Outdoor Recreation Opportunities for Everyone

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 . . .

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Durable Medical Equipment Support through MDA

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 . . .

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MDA Tribute Tour Takes Nashville: A Night at the Grand Ole Opry

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 . . .

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Quest for Success: Matthew Lawson

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 . . .

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FDA Approves Alexion’s Ultomiris for Treatment of gMG

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 . . .

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Simply Stated: Inclusion Body Myositis, Revisited

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 . . .

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MDA Recognizes the Esteemed Members of Our Volunteer Advisory Committee

For over 70 years, the Muscular Dystrophy Association has led the way as the #1 Voluntary Health Organization in the U.S. for people living with neuromuscular diseases. Through volunteer committees, boards, community events, and Summer Camps where kids build confidence and independence, volunteers are tightly woven into MDA’s fabric. We could not build on our . . .

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Adaptive Sports Offer Benefits for All Ages

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 . . .

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Promoting Diversity in Rare Disease Research

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 . . .

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