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Tap Into Accessibility with These Underused Smartphone Features
What if I told you that a handheld device you use daily is over a million times more powerful than the computer that put astronauts on the moon? Five decades later, smartphones have become keys to independence, innovation, and creativity. But are you getting the most out of yours? Read on to learn about features and…
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Ready to Work: How People with Disabilities Balance Benefits and Employment
Justin Moy excelled in science and technology in high school. Like many bright kids, he decided to use his talents to pursue a career in medical research. Along with his innate gifts, however, he had a personal motivation — to find a cure for the neuromuscular disease he lives with: LAMA2 congenital muscular dystrophy (CMD).…
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Mashauna Black Keeps Following Her Passion
Mashauna Black measures her success by celebrating the success of others. The 48-year-old YWCA Gateway to Success Program Director, who lives with limb-girdle muscular dystrophy (LGMD), finds joy in educating, empowering, and motivating others to live healthier. Finding a path that fits Mashauna visited Las Vegas with her cousin. Mashauna always knew she wanted a…
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4 Key Ways to Support Siblings of Kids with Neuromuscular Diseases
When a child is diagnosed with a neuromuscular disease, it impacts the whole family, including siblings. A child with a neuromuscular disease generally requires extra healthcare visits and special care and attention from parents. Living with a sibling with a disability often involves taking on extra responsibilities at home and cultivating awareness of accessibility and…
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Innovations in GNE Myopathy Research
GNE myopathy is an inherited neuromuscular disease with an estimated prevalence of 1 to 9 in 1 million. It usually starts between the ages of 20 and 40. The first sign is often trouble lifting the front part of the foot (foot drop) because of weakness in the lower leg muscles. Over time, the weakness…
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Stem Cell Innovations Drive Advances in Muscle Regeneration
A group of scientists and patient advocacy organizations met in July 2024 to discuss one of the biggest questions in the world of neuromuscular disease: Can muscle be restored after it is lost to a muscle disease? It was MDA’s inaugural Muscle Regeneration Summit, a first-of-its-kind effort not only to summarize the research to date…
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Volunteers Make a Big Impact on the MDA Community
Almost 2,000 people have volunteered for MDA in the past year. These dedicated individuals devoted their skills and more than 156,000 hours to make a direct, positive impact on people living with neuromuscular diseases. We spoke with Wendi Dressen, MDA’s Senior Director of Volunteer Programs, to learn more about MDA’s volunteer program and its impact.…
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Milestone Moment: A Look Back at the First Gene Therapy Trial for DMD
In 2006, MDA funded the first-ever gene therapy trial for Duchenne muscular dystrophy (DMD). This pioneering trial was a significant step toward addressing the root cause of DMD, and it laid the groundwork for future gene therapies in the neuromuscular field. Jerry Mendell, MD (second from right), led the first clinical trial for a DMD…
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Why You Should Practice Shared Healthcare Decision-Making
Facing a neuromuscular disease diagnosis can be overwhelming, but the more that individuals and their caregivers can be involved in the treatment plan, the more empowered they will feel. Gone are the days when a doctor simply gave instructions and sent the patient on their way. “It used to be that you went to the…
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From the Ski Slopes to the Spirit of Inclusion
When I was learning to ski as a child in Washington state, like anyone new to the sport, I fell a lot and struggled with the equipment. I remember being afraid to point my skis downhill. But my strongest memory is the exhilarating feeling of freedom and independence as I glided down the mountain. That…
