Simply Stated: What is Becker Muscular Dystrophy?

Becker muscular dystrophy (BMD) is a rare genetic disorder involving mutations of the dystrophin gene. BMD exhibits similar signs and symptoms to another condition, Duchenne muscular dystrophy (DMD), which is caused by different mutations in the same gene. Although both conditions affect skeletal muscles used for movement, as well as heart muscles, they differ in . . .

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Self-Care for the New Year

When psychotherapist and disability advocate, Lauren Presutti, needs to recenter with a little self-care, she focuses on taking the time to tune into her feelings.  Lauren, who lives with congenital muscular dystrophy (CMD), is an expert in the mental health field and recognizes the value of self-care.  “Remember to acknowledge and express your feelings, whatever . . .

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Reflecting on our 2021 Advocacy Accomplishments

2021 was another challenging year for many, but once again, MDA’s grassroots advocates were relentless in ensuring lawmakers heard their voices. Throughout the year, our volunteers emailed, called, and met with important decision-makers urging them to act on vital public policy that will improve the lives of people living with neuromuscular disease and their families.  . . .

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Research Study Alert: Survey for Siblings of Individuals with DMD about Disclosure and Communication within the Family

Researchers at Boston Children’s Hospital/Brandeis University are seeking unaffected siblings of boys with Duchenne Muscular Dystrophy (DMD) to participate in a survey about their perspectives on disclosure and communication within the family. The information gained from this study will be used to guide parents on how to best communicate information about DMD to their family members. . . .

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Alcohol and Neuromuscular Disease

It’s no secret that alcohol consumption can have an impact on one’s health. Some studies have shown benefits for the heart and circulatory system from moderate drinking. On the other hand, alcohol is known to depress the central nervous system and can destroy brain cells. Excessive drinking over a prolonged period of time can cause . . .

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How Parents Can Help Kids Prepare for Adult Life

For 18 years, Linda VanVliet spent most of her non-working time taking care of her daughter, Shelby, who was diagnosed with congenital muscular dystrophy at 3 years old. (That diagnosis was later changed to titin myopathy.) Linda’s work as a school nurse also allowed her to step in quickly when Shelby needed care.  “For a . . .

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Online Therapy and Support Groups Are Good for Your Mental Health

When the COVID-19 pandemic began, much of the healthcare system shifted from primarily face-to-face visits to a wider acceptance of telehealth, or virtual appointments using computers, tablets, or smartphones. Health insurers quickly pivoted to covering virtual visits, as the pandemic required social distancing. And while the pandemic will, eventually, wind down, healthcare experts believe greater . . .

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What You Need to Know About Finding and Visiting an MDA Care Center

Located at more than 150 of the top healthcare institutions across the United States, MDA Care Centers serve as the nexus for expert clinical care and medical research. Our Care Center Network offers tens of thousands of appointments each year for individuals living with muscular dystrophy, ALS, and other neuromuscular diseases. These appointments provide individuals . . .

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