Michelle Murphy, a marketing coordinator from Albany, N.Y., with myotonic muscular dystrophy (MMD, or DM), has been running for as long as she can remember. So when she was diagnosed with MMD in the summer of 2014, she began looking for ways she could use her passion for running to raise money to fight the disease.
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Scott Hatley, 37, began playing adaptive sports soon after he was diagnosed with Duchenne muscular dystrophy (DMD) at age 4. He began with wheelchair basketball, playing with friends in his garage. From there, he went on to adaptive skiing, wheelchair rugby and a few other activities before finding his current passion, electric hockey. E-hockey relies on battery-powered carts that can zoom up to 10 mph and turn on a dime.
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Manufacturer, brand and model are merely the first choices in the methodical process of wheelchair seating assessment. These days, it’s wheelchair accessories that present the widest selection and biggest potential for enhancing independence and mobility. There are accessories for comfort, attachments for smoother rides and additions designed to maximize independence for people living with neuromuscular diseases.
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When Jessica Aviles’ son Gabe was diagnosed with Duchenne muscular dystrophy (DMD) in November 2015, it was a complete shock. “I literally knew nothing [about the disease,]” Aviles says. “I had to look it up in the parking lot.”Over the next six months, Aviles went from knowing nothing about DMD to heading the largest Muscle Walk team at the MDA Muscle Walk of Tampa Bay. Early on in her research, Aviles came across MDA and Muscle Walk and decided to get involved so she and her family could join and support MDA’s cause.
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“I am the captain of the Muscle Walk team Hope for Harrison. The team walks in honor of Harrison, my son, who was diagnosed with Duchenne muscular dystrophy in the summer of 2011. The biggest reason I support MDA is that MDA is about living a full life, including working to ensure those living with diseases like DMD live long, full lives.” — Jessie Aldridge, parent
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Results from an MDA-supported multicenter phase 1b clinical trial have shown that treatment with pyrimethamine was safe and well-tolerated and associated with reduced levels of SOD1 protein in people with ALS caused by a mutation in the gene for SOD1.Pyrimethamine is a small molecule approved by the U.S. Food and Drug Administration for treatment in humans of the parasitic infections malaria and toxoplasmosis.
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This summer, MDA launched a new campaign called Live Unlimited that was inspired by the stories of individuals and families we serve. Together with our MDA community, we’ve challenged Americans to defy their limits — those we sometimes place on ourselves and those defined by others — and live life to the fullest.
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After listening to inspiring individuals with neuromuscular diseases and their families, the Muscular Dystrophy Association (MDA) launched a revitalized brand and new look for Quest Magazine in January 2016. We'd like to know what families think of Quest. Please take a few minutes to fill out the Quest Reader Survey and provide your feedback so we can continue to improve the information and resources we share in each issue.
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MDA families face daily challenges that often make walking, playing, running, getting dressed, hugging and talking difficult — sometimes seemingly impossible. But these courageous families are defying their limits every day and inspiring a nation to do the same.For example, Davion Bartlett was diagnosed with Duchenne muscular dystrophy when he was 4 years old. He quickly learned as a young child that his disease would never define him or hold him back.
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There are so many noble reasons to be an MDA Summer Camp volunteer, and Elizabeth Barrett can easily chat up every last one. As a six-year veteran volunteer at the St. Louis-area MDA Summer Camp, now held annually at Pinecrest Camp in rural Madison County, she immediately launches into how MDA’s life-changing summer camps give kids with muscular dystrophy and related life-threatening diseases that limit muscle strength and mobility one blissful week when they can play and live unlimited in an environment without barriers.
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