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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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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Talking About Your Child’s Diagnosis Helps Build Your Support System

When Stephanie and Wayne Donato received the diagnosis of Duchenne muscular dystrophy (DMD) for their son Maximus, who was 4 at the time, in 2017, “we were completely blindsided,” Stephanie says. The couple quickly realized there were a lot of people they needed to tell, and they started with their own family. The Donatos also . . .

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MDA Helps Students and Teachers Achieve Success Together

It can be overwhelming for educators to learn the various challenges associated with neuromuscular diseases and to take those considerations into the classroom. The good news is that these students also come with their own unique set of deep strengths, and educators’ role in encouraging, supporting, and motivating them draws on many of the skills . . .

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