Quest for Success: Alexa Dectis

As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to kick off 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 . . .

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It Helps to Have a Friend Who Understands Your Neuromuscular Disease

For the first six months following her amyotrophic lateral sclerosis (ALS) diagnosis, Valerie Geerer’s instinct was to keep the news to herself. “My husband and close family and friends knew, but I didn’t feel comfortable sharing it with co-workers or acquaintances,” she says.  Then she met Dora Sementilli. Like Valerie, Dora was in her 50s . . .

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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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