An expression of the live unlimited spirit, stories and voices of the MDA community
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 . . .
I was honored to be asked to be a guest blogger to discuss the topic of Father’s Day. I have been fortunate enough to have a wonderful father all my life who has supported me, always had my back, and still does! For those who don’t know me, I am currently serving as National Ambassador . . .
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.” . . .
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 . . .
Living as an adult with a disability means trusting other people to assist you with daily tasks, some of which are intimate or make you feel vulnerable. How you approach hiring personal care attendants (PCAs) to perform those caregiving tasks is a personal choice. Some people prefer to use a home health agency, which streamlines . . .
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 . . .
The Muscular Dystrophy Association, and the neuromuscular disease community has been a part of my extended family my entire life. And so today, on one of the biggest days of my life, it felt right to celebrate with all of you. I started writing when I was about eight years old. Mostly fiction, I loved . . .
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 . . .
The Muscular Dystrophy Association is dedicated to empowering and encouraging you to manage your diagnosis and care plan. Feeling prepared for your visit to an MDA Care Center and knowing what to expect can ensure that all of your questions regarding your or your loved one’s care plan are answered. Throughout this article, you will . . .
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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