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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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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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The Expanding Therapeutic Landscape for Myasthenia Gravis

Myasthenia gravis (MG) is an autoimmune disease that leads to muscle weakness. It affects about 14 to 20 out of every 100,000 people. The age of onset varies widely, but typically it is diagnosed in women in their 20s and 30s and men in their 60s or later. In about 10% to 15% of cases, MG begins in childhood.

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Change for the Better

Stephanie Erbacher is a passionate advocate on behalf of her 12-year-old daughter, Rylie, who has spinal muscular atrophy (SMA). Her path to advocacy started when Rylie couldn’t swing at a local playground in Cedar Rapids, Iowa.“I pushed the parks department to put in an adaptive swing with back support and a solid harness in front,” Stephanie says. When park officials responded that an accessible playground might be built in more than a year, Stephanie pressed on, emailing the city manager and eventually talking to the superintendent of parks. “I let them know I had researched costs of the swing and was very motivated to work with the city to see how we could find a solution that would allow disabled children to have even just a single option to be included at the playground.”

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Expanding Access to Genetic Testing

Genetic testing plays an important role in diagnosing, treating, and managing neuromuscular disease. “Genetic testing can shorten the time to diagnosis and prevent misdiagnosis of muscular dystrophies,” says Robert Nussbaum, MD, chief medical officer of Invitae, a leader in advanced medical genetics. “An earlier, accurate diagnosis can facilitate earlier interventions, alert physicians about potential complications, allow genetic counseling of family members, and support clinical research into neuromuscular diseases.”

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Smashing Stereotypes

We all know sororities have a stereotype: skinny girls with blonde hair and blue eyes. I have never seen a disabled sorority girl.Despite that stereotype, I knew I wanted to be a part of Greek life when I started my freshman year at Central Michigan University (CMU) in fall 2019. I signed up for formal recruitment as soon as registration opened.

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MDA’s 2020 Advocacy Agenda Update

There’s no doubt that 2020 has not turned out the way anyone expected. The COVID-19 pandemic has caused all of us to rethink our plans, including MDA’s 2020 Advocacy agenda. Although our priorities have shifted to accommodate the new challenges presented by the pandemic, our commitment to ensuring lawmakers hear the voices of the neuromuscular disease (NMD) community remains steadfast, especially in these uncertain times.

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