Strongly


An expression of the live unlimited spirit, stories and voices of the MDA community

The MDA Ambassador Role & How to Become One

MDA Ambassadors are individuals affected by neuromuscular disease who share their story and help raise awareness, thus broadening the impact we make and bringing visibility to our mission. Beginning in the early 1950s, when public awareness and understanding of muscular dystrophy and related diseases were almost non-existent, MDA put a human face on its mission . . .

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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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MDA Declares 2022 The Year of Independence

For more than 70 years, the Muscular Dystrophy Association (MDA) has been committed to empowering people living with muscular dystrophy, ALS, and related neuromuscular diseases to reach their potential.  Through the decades, MDA has led the way through our innovations in care, research, and advocacy.   This year, we go bigger. In an interview with . . .

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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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FDA Approves argenx’s Vyvgart for Treatment of gMG

On Dec. 17, the US Food and Drug Administration (FDA) granted approval to efgartigimod (Vyvgart) for the treatment of generalized myasthenia gravis (gMG) in adults who test positive for the anti-acetylcholine receptor (AChR) antibody. To date, Vyvgart is the second disease modifying drug approved to treat gMG. Vyvgart will be made available in the United States . . .

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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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