Education

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.

Disability… or Superpower?

When I Google the definition of the word “disability,” this is what is returned: a physical or mental condition that limits a person’s movements, senses, or activities. Period. End of story. That’s all they have to say about that.But I have my own definition of disability. I define it as an opportunity to learn or heighten skills like positivity, determination, problem-solving, and about a billion others. It is a differentiator. (Who wants to be like everyone else, anyway?) It is an opportunity to do hard things and show the world the ease with which you can pull them off. It is an opportunity to laugh at the surprising and ridiculous things that occur daily. And it is a tool you can employ — just by existing and being who you are — to impact people around you with lessons on compassion, kindness, and open-mindedness.

The Search for Inclusion-Body Myositis Treatment

Inclusion-body myositis (IBM) is one of the most common disabling inflammatory myopathies in older adults, but its underlying cause is poorly understood.IBM is characterized by progressive muscle weakness and wasting. In patients with the disease, inflammatory cells invade muscle tissue and collect between the muscle fibers. Muscle biopsies of patients diagnosed with IBM reveal multiple “inclusion bodies” containing cellular material of dead tissue.

The Way of the Future

As the novel coronavirus pandemic has called for vigilance in health safety measures such as social distancing — especially for people with neuromuscular disease who are at higher risk for severe illness related to COVID-19 — many of us have had to rethink how we do what we need to do. We’ve adjusted how we see our families and friends, how we get food and medicine, and how we continue care with therapists and physicians who, themselves, may work in high-risk locations.

From a Distance

When Faith Fortenberry’s elementary school closed in March because of the novel coronavirus pandemic, she missed seeing her friends and teachers every day. An outgoing 9-year-old living with spinal muscular atrophy (SMA), Faith thrives on social interaction. Even so, she found that online learning offered some advantages.

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.”

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.”

Smashing Stereotypes

We all know sororities have a stereotype: skinny girls with blonde hair and blue eyes. I have never seen a disabled sorority girl.Despite that stereotype, I knew I wanted to be a part of Greek life when I started my freshman year at Central Michigan University (CMU) in fall 2019. I signed up for formal recruitment as soon as registration opened.

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.

Coping Through a Crisis

(Editor’s note: In the print edition of Quest Issue 1, 2020, Sarah Clark-Stoney, MSW, LSW, was misquoted. Her quotes have been clarified here, and updated in the full, downloadable PDF version of Issue 1, 2020.) Fifteen years ago, my family lived through Hurricane Katrina in Louisiana. At the time, our son was a freshman in high school. Falling pine trees and rain destroyed half of our home. Rebuilding took seven months, and we lived in the chaos during the process.

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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 services are only available in the U.S.

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