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Recent Quest Articles

Running to a Cure

Indianapolis Colts running back Nyheim Hines, whose mother, grandmother, and uncle live or have lived with limb-girdle muscular dystrophy (LGMD), has been a longtime supporter of MDA. Now, as MDA’s official 2021 spokesperson, he will make an even greater impact in the quest to find a cure."Having family members with muscular dystrophy has always motivated me to spend my free time trying to raise awareness, so we can find cures and provide the best care for families across the country living with these diseases," Nyheim says.

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How to Make a Decision About a Clinical Trial

Colleen and Chris Labbadia of Geneva, Fla., became concerned when their son, Brendan, was slow meeting early physical milestones. He was diagnosed with Duchenne muscular dystrophy (DMD) before his second birthday, and when he was 4, they enrolled him in a clinical trial for an experimental drug. "It was the hope for a better future for Brendan," Colleen says.

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Expanding Knowledge on GNE Myopathy

Tahseen Mozaffar, MD, is a neurologist and director of the ALS & Neuromuscular Center at the University of California-Irvine. He’s also a leading world expert on GNE myopathy, a form of muscular dystrophy that affects an average of one person per million worldwide.GNE myopathy is caused by mutations in the GNE gene, which is responsible for a step in the production of a sugar called sialic acid. This results in decreased attachment of sialic acid groups to skeletal muscle cells, which is thought to be why the disorder leads to muscle atrophy and weakness.

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Breaking Healthcare Barriers

When she lived in Dallas, Kelly Pagano regularly visited her local MDA Care Center and felt confident in the way her medical team managed her condition, limb-girdle muscular dystrophy (LGMD). Along with regular check-in appointments, the clinic provided a wealth of information about her disorder and research updates, connected her with local resources, and offered participation in clinical trials. She also participated in local support groups and MDA events.

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Find the Right Resources

Amy Curran, 38, lives in Philadelphia with GNE myopathy, as do her three older siblings. Considering the high cost of accessible vehicles, this close-knit family decided to pool their resources and buy one wheelchair-accessible van. They use an online calendar to keep track of who’s using the van when. The van fits two power wheelchairs, so they often take turns going on outings in pairs.

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Express Delivery

Usually, viruses are bad news. But lately, they’re getting good press, thanks to the COVID-19 vaccines created by AstraZeneca, Johnson & Johnson, and Immunity Bio, which use viral vectors to deliver instructions to our cells to fight off the novel coronavirus.Delivering immunity isn’t the only thing viral vectors can do. They also hold great promise in gene-targeted therapies for neuromuscular diseases.

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A Little Piece of the Future

Of the 80 patients in the phase 2b international Fulcrum ReDUX4 clinical trial, my mom and I are two. To the trial, we are data — nameless numbers in different age groups from states separated by half the country that met all of the eligibility requirements. To us, we are doing something together to advance science on behalf of everyone living with facioscapulohumeral muscular dystrophy (FSHD).

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MDA Q&A: Top of Mind

You don’t have to navigate your neuromuscular disease journey alone. The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ top questions. Q: I have oculopharyngeal muscular dystrophy (OPMD). Is COVID-19 vaccination safe for people with neuromuscular disease? Are there any side effects?

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Support for Your Journey

Why do people contact the MDA Resource Center? There are a lot of reasons, according to Brooke Smith, associate director of the Resource Center.It could be that they or a family member was recently diagnosed with a neuromuscular disease, and they need information about the disease or want to find an MDA Care Center.

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Parent Pressure

Since her son Jackson's diagnosis at 3 months old, Marcie Epstein has always maintained a grounded perspective on his neuromuscular disease. Jackson, now 12, first showed signs of central core disease (CCD) at 5 weeks. "This is how Jackson was born," Marcie says. "This is his life."

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MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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