Simply Stated: What is Myotonic Dystrophy?

Myotonic dystrophy (DM) is a type of muscular dystrophy that affects about 1 in 8,000 people worldwide. The disease is known by several names, including Steinert disease, after the doctor that first described it, and “DM” in reference to its Greek name, dystrophia myotonica. Similar to other forms of muscular dystrophy, DM is characterized by . . .

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How to Set Goals for Personal Growth and Wellness

When he was 15 years old, Elijah Stacy had a dream: to end Duchenne muscular dystrophy (DMD), the disease that affects him and thousands of other people. So, he decided to start a nonprofit called Destroy Duchenne to support advancing gene-editing and gene-therapy technologies to find a cure for DMD.  To achieve his ambitious goal, . . .

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MDA Shamrock’s 40th Birthday T-shirt: The Mind Behind the Design

To commemorate the 40th Birthday of MDA Shamrocks with a special edition T-shirt, the MDA enlisted the talent and expertise of freelance graphic designer, Dustin Clark. Dustin, a 28-year-old designer and illustrator living with Becker muscular dystrophy, is passionate about the incredible impact that MDA Shamrocks has had on the neuromuscular community. He was excited to . . .

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Staying Connected with MDA

At a time when so much is changing, one thing that remains constant is the Muscular Dystrophy Association’s dedication to providing programs and support to help children and adults with neuromuscular disease live longer and grow stronger. A diagnosis of muscular dystrophy, ALS, or other related neuromuscular disease can bring many challenges to individuals and . . .

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Quest for Success: Nicole Lahoud

As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to present our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog will detail the different paths that individuals with neuromuscular disease have taken to reach their potential and the . . .

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Ensuring Economic Independence for the Neuromuscular Community

Did you know that according to a recent MDA survey, only 21% of adults living with neuromuscular disease are working part or full-time? Many individuals with disabilities have a desire to work but face employment hurdles, including the lack of wraparound support services, inaccessible workplaces, discriminatory wages, and a potential loss of Supplemental Security Income . . .

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Research Study Alert: Survey of Pain Self-Management and Well-Being in People with General Pain or with Myotonic Dystrophy

Researchers at Newcastle University are seeking adults living with general pain or with myotonic dystrophy (DM) to participate in a survey to learn about the ability of individuals affected by these conditions to self-manage pain and to determine how this affects overall well-being. This study involves a 15-20 minute online survey. To be eligible, individuals must . . .

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Life-Saving PJ’s Protocol Was Inspired by a Person With DMD

At Daytona International Speedway, if you see a silver wheelchair-accessible minivan flash by outside the stadium, it’s shuttling people who need assistance getting around the expansive venue. Philip James “PJ” Nicholoff would be happy knowing that his family donated his beloved van to the speedway, and its back windows display signage honoring him. A big . . .

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Simply Stated: What is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) belongs to a group of rare genetic disorders, known as dystrophinopathies, that are caused by mutations of the dystrophin gene. DMD is characterized by progressive degeneration and weakness of the body’s voluntary muscles, primarily the skeletal muscles that control movement. In later stages, the heart and respiratory muscles may also be . . .

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International Day of Women and Girls in Science: MDA’s Spotlight on Dr. Angela Lek

In recognition of International Day of Women and Girls in Science, the Muscular Dystrophy Association (MDA) is honored and excited to highlight the career and accomplishments of Dr. Angela Lek, PhD. International Women and Girls in Science Day, February 11, endeavors to acknowledge and celebrate the invaluable role that women and girls play in accelerating . . .

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