Resources
Help Wanted
Sarah Schwegel, an organizing and advocacy specialist with Paraquad in St. Louis, began working from home last March as the COVID-19 pandemic emerged in the United States. Having spinal muscular atrophy (SMA), Sarah realized that she was at higher risk for complications if she contracted the illness. Her employer supported her request to work remotely.
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Education Within Reach
To make planning for and going to college easier for students with neuromuscular disease, MDA launched a new online workshop called Access to Education: Higher Education. This no-cost educational program, available on-demand, offers an overview of common considerations, tips for choosing a school, information on financial preparation, and guidance on finding support if students encounter access barriers during their higher education experience.
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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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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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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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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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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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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.
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Plan for a Bright Future
Josie Badger, DHCE, CRC, has used everything that life has handed her, including her disability, to pursue her dreams. Diagnosed with congenital myasthenic syndrome (CMS) at age 11, Josie now relies on a ventilator, power wheelchair, and 24-hour care. While many would see such challenges as a roadblock to pursuing an occupation, she has used them to fuel a career she is passionate about: advocating for disability rights.
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Creativity and Adaptability
As the novel coronavirus pandemic forced people to stay home and brought job loss or economic instability to many, a snapshot of the neuromuscular disease community shows examples of creativity and adaptability in the face of unexpected challenges. In three stories, members of our community share how they handled the pandemic’s financial impact.
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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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