Education

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.

The Importance of Genetic Testing

Kelly Berger, 31, of Cincinnati, spent most of her life chasing a diagnosis. When she was 3, her parents noticed that, although she reached physical milestones for her age, she did them in unusual ways. For example, to step up, she pushed off her thighs with her hands, and she preferred crawling on stairs to walking them. Her parents took her to a neurologist and, after bloodwork, an electromyography (EMG), and a muscle biopsy, she received a diagnosis of spinal muscular atrophy (SMA) type 3. That was in the early 1990s, when fewer types of neuromuscular disease were understood.

What’s the Toy Story?

Barbies were a favorite toy of young Jessica Hetzel, despite the fact that the dolls looked nothing like her. It took until February 2019, when Jessica was 17, for Mattel to release a Barbie in a wheelchair. “I’m not playing with Barbies these days,” says Hetzel, who has spinal muscular atrophy (SMA). “But I was excited to see they finally did it.”

Dollars for Scholars

The cost of higher education has soared over the past two decades. According to U.S. News & World Report, in-state tuition and fees at public universities have increased 243 percent, while they have jumped 168 percent at private institutions. For many prospective college students, winning scholarships is key to making education more affordable. The trick is thorough research. There are lots of scholarships out there, many of which are earmarked for individuals with particular backgrounds, students applying to particular schools, students pursuing particular fields of study and myriad other considerations. The best advice for students seeking financial assistance? Think broadly about how your situation applies to scholarships’ requirements and, above all, don’t be afraid to apply.

Designing Her Dreams

Allie Williams, a 25-year-old who lives with Charcot-Marie-Tooth (CMT) disease, earned her master’s degree in biomedical engineering from Texas A&M University in 2017. Williams always knew she wanted to help individuals with disabilities, but it wasn’t until her junior year of high school that she found the right fit.

Career Starters

For Victoria Haire, landing a summer internship in the Dallas MDA office this year wasn’t simply a way to see what it was like to work in the business world; it was life-changing.Haire, who hails from Louisville, Ky., was diagnosed with limb-girdle muscular dystrophy (LGMD) at age 5. As part of her five-week internship with MDA, she got to work in an MDA Care Center alongside MDA’s family care specialists. “I knew right in that moment that this is what I need to do,” says Haire, 21, a University of Southern Illinois student studying communications with a minor in social work. “I texted my parents on the first day and said, ‘This is my calling.’”

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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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