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Resources

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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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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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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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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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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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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