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CureDuchenne and Children’s Hospital of Orange County Partner to Bring World-Class Care to Families with Duchenne Muscular Dystrophy
CureDuchenne Clinic within the Neuromuscular Program at CHOC Will Expand Access to Exceptional Care, Deliver Cutting-Edge Treatments, and Drive Innovative Research Newport Beach, CA– March 3, 2025– CureDuchenne, a global leader in Duchenne muscular dystrophy (DMD) research, care, and advocacy, has announced a landmark partnership with Children’s Hospital of Orange County (CHOC) to establish the…
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MDA Clinical & Scientific Conference starts on March 16
The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place on March 16-19 in Dallas at the Hilton Anatole. The four-day event will bring together scientists, clinicians, affiliated healthcare providers, academicians, advocates, and industry leaders from around the world to explore…
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Accommodations and Independence: Spreading My Wings on Campus
Sydney Bryant lives in Illinois with her parents. She loves to travel and plans to work as an air traffic controller. A few years ago, Sydney had the honor of having her wish granted by Make-A-Wish and traveled to Hawaii, where she had an amazing time. Sydney lives with an unspecified mitochondrial depletion. My first…
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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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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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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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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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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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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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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…
