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From a Distance

When Faith Fortenberry’s elementary school closed in March because of the novel coronavirus pandemic, she missed seeing her friends and teachers every day. An outgoing 9-year-old living with spinal muscular atrophy (SMA), Faith thrives on social interaction. Even so, she found that online learning offered some advantages.

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Reimagined and Moving Forward

On Oct. 24, actor and comedian Kevin Hart, dozens of his celebrity friends, and the MDA community joined together to raise funds for research, care (including Summer Camp and educational programming), and advocacy during The MDA Kevin Hart Kids Telethon.“This was an incredible experience — bringing the work of the Muscular Dystrophy Association forward,” said Kevin, who hosted the two-and-a-half-hour live event. “It’s been an honor to collaborate with MDA and educate the public about supporting people with disabilities. We are all in this together.”

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Business Unusual

Over the summer, I wished I could go to the movies, enjoy a meal out with friends, and explore the latest fashions at my favorite malls. Instead, I didn’t go any farther than the parking lot outside my apartment building.But, honestly, I wasn’t brought down by sheltering in place. I’m really a homebody, and I’ve worked hard to make my home my sanctuary. Also, in some ways, the COVID-19 pandemic ended up being a blessing in disguise.

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2020 Reader Photo Contest Winners

Congratulations to Julie MacIntyre of Millville, NJ, our Lasting Impression Photo Contest winner.Julie, 32, was three months post-heart transplant when she and her boyfriend, Barry, went parasailing during a weekend trip to Ocean City, NJ, in 2017.“It was the first time I realized that I can do things now that I wasn’t able to for a really long time,” says Julie, who lives with limb-girdle muscular dystrophy (LGMD). “It was one of the best experiences I’ve had, even to this day.”

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Clinical Trials During COVID-19

As novel coronavirus infections and deaths continue to climb across the United States, so do concerns about the success of more than 100 clinical trials in amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD), spinal muscular atrophy (SMA), and other neuromuscular diseases.These anxieties range from the ability of pharmaceutical companies to conduct valid, verifiable trials in the midst of a pandemic to worries that the US Food and Drug Administration’s (FDA’s) focus on COVID-19 will take attention away from rare genetic disorders.

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The Search for Inclusion-Body Myositis Treatment

Inclusion-body myositis (IBM) is one of the most common disabling inflammatory myopathies in older adults, but its underlying cause is poorly understood.IBM is characterized by progressive muscle weakness and wasting. In patients with the disease, inflammatory cells invade muscle tissue and collect between the muscle fibers. Muscle biopsies of patients diagnosed with IBM reveal multiple “inclusion bodies” containing cellular material of dead tissue.

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The Way of the Future

As the novel coronavirus pandemic has called for vigilance in health safety measures such as social distancing — especially for people with neuromuscular disease who are at higher risk for severe illness related to COVID-19 — many of us have had to rethink how we do what we need to do. We’ve adjusted how we see our families and friends, how we get food and medicine, and how we continue care with therapists and physicians who, themselves, may work in high-risk locations.

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Clinical Trials During COVID-19

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