
Resources

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.
Read More
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 More
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.
Read More
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.
Read More
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.
Read More
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.
Read More
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.”
Read More
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.”
Read More
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.
Read More
7 Ways to Make Life at Home Easier
Now, more than ever, we’re spending a lot of time at home. While the continuing threat of the novel coronavirus makes this the safest place to be, home is also a place where frustrations can multiply when trying to accomplish everyday tasks.We chatted with experts and people living with neuromuscular diseases to get tips on how to ease some common struggles so you can truly feel the comforts of home.
Read More- Recent Quest Issues
- Quest Issue 1, 2021
- Quest Issue 3, 2020
- Quest Issue 2, 2020
- Quest Issue 1, 2020
- Quest Issue 4, 2019
- Quest Issue 3, 2019
- Quest Issue 2, 2019
- 2019 Conference Edition
- Quest Issue 1, 2019
- Quest Fall 2018
- Quest Summer 2018
- Quest Spring 2018
- Quest Winter 2018
- Quest Fall 2017
- Quest Summer 2017
- Quest Spring 2017
- Quest Winter 2017
- Quest Fall 2016
- Quest Summer 2016
- Quest Spring 2016
- Quest Winter 2016
- Quest Categories
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 services are only available in the U.S.
Request Services