An expression of the live unlimited spirit, stories and voices of the MDA community

Limited Edition DeMarini Bat to Raise Awareness for MDA

Anyone who knows softball and baseball the way that Kevin “Joey” Daily does, knows that DeMarini bats are some of the finest performance bats on the market. In addition to a variety of doublewall and singlewall top-of-the-line bats, Demarini also releases an annual, limited-edition bat. These special edition bats are produced in incredibly small batches . . .

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Life at the Intersection of Disability and LGBTQ

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.” . . .

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Simply Stated: What Is Neuromuscular Disease?

Neuromuscular disease refers to a diverse group of rare conditions that affect some part of the neuromuscular system, such as: Muscles Nerves in the peripheral nervous system (arms and legs) Nerves in the central nervous system (spinal cord) The neuromuscular junction, where nerves and muscles meet Neuromuscular diseases generally cause muscle weakness, fatigue, and other . . .

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MDA Tribute Tour Takes Houston: A “Family Reunion” to Remember

Thursday night, June 2, 2022, individuals from the Muscular Dystrophy Association (MDA), along with local volunteers, MDA families and MDA partners descended on Hotel ZaZa in Memorial City, Houston, Texas for what was truly a magical night. The evening consisted of a never-ending photo-op station, lots of conversation and reconnecting with friends, food AND the . . .

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Eledon Announces Positive Topline Results from a Phase 2a Study of Tegoprubart to Treat ALS

On May 31, Eledon announced positive topline results from its Phase 2a clinical trial of the investigational therapy tegoprubart (formerly AT-1501) for treatment of amyotrophic lateral sclerosis (ALS). The primary endpoints of the study, assessment of safety and tolerability, demonstrated an encouraging safety profile that supports further investigation. Secondary endpoints showed that the drug engaged . . .

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Simply Stated: What is Friedreich’s Ataxia (FRDA)?

Friedreich’s ataxia (FRDA) is an inherited neuromuscular disease that primarily impacts the nervous system and heart and affects about one in 50,000 people worldwide. FRDA typically appears in people before the age of 25 years and is characterized by a slow, progressive loss of limb coordination (ataxia) and effects on speech and swallowing. While there . . .

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