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Recent Quest Articles
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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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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Make Your Wishes Known
The saying “not making a choice is making a choice” is especially true when it comes to making future plans for yourself or your child with a neuromuscular disease. If you don’t document your wishes for unforeseen circumstances or health emergencies, choices that are important to you might be made by others.
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Happy (Virtual) Camper
For Lily Ruta, 12, the 2020 virtual MDA Summer Camp offered one of her favorite activities — arts and crafts — plus an added bonus: connecting with kids like her all over the country.“After the first day of camp, Lily was so excited to talk to me about another child she met with CMT [Charcot-Marie-Tooth disease] type 1A who has a mom with CMT, too — same as us — and who wears braces, too. She also found a friend who loves the same book series,” says Lily’s mom, Melissa, who also lives with CMT.
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Are Vaccines Safe?
Vaccines are big news these days, but what exactly are they?Typically given as a shot, vaccines are an important tool to help prevent people from getting sick with or dying from preventable diseases. Different types of vaccines work in different ways, but they all cause you to develop special cells, or antibodies, that help your body fight a specific disease.
Read MoreMDA 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.