
Employment

Claiming Success
The Year of Independence is the perfect time to celebrate individuals in our MDA community who are shattering expectations and forging forward to achieve their goals.The personal story of the Honorable Robert Pipia, a judge in the District Court of Nassau County, New York, who lives with an undiagnosed neuromuscular disease, proves the power of resilience and advocacy.
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Profiles in STEM
Although students with disabilities indicate interest and intent to pursue science, technology, engineering, and math (STEM) careers at the same rates as students without disabilities, they do not receive an undergraduate degree or pursue STEM graduate studies at the same rates. This fact was reported by the National Institutes of Health (NIH) in 2021. They also cited several barriers, for people with disabilities, including lack of recruitment and engagement and an absence of mentors and role models.
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The Hidden Benefits of Volunteering
Blaine, a 6-year-old black lab, is assistance dog extraordinaire to Bella Andrade, 19, who lives with spinal muscular atrophy (SMA) and uses a power wheelchair. Receiving Blaine from the Minnesota nonprofit Can Do Canines in October 2017 was a life-changing gift for Bella. With a verbal command, Blaine will open a drawer, push a handicap door access button, or retrieve a dropped pen or smart phone.
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STEM Connections
As part of MDA's STEM (science, technology, engineering, and math) Connections program, MDA representatives sat down with experts from General Motors (GM) in July 2021 to discuss STEM education and careers.The panel was co-moderated by MDA Ambassadors Justin Moy and Amanda Zurek, both of whom are pursuing careers in STEM-based fields, and it featured engineers, designers, and innovators from GM. Together, they discussed their experiences with STEM careers, how they are working to improve accessibility and address sustainability, and the importance of encouraging youth of all abilities and backgrounds to enter STEM-based fields.
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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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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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Making the Workplace Accessible
When Josh Moser transitioned from college to a career 10 years ago, having Duchenne muscular dystrophy (DMD) was a concern he wasn’t quite sure how to handle. He felt nervous talking about his needs, he recalls, worried that it might sabotage his job prospects. Fortunately, the financial services firm where he was temping appreciated his work and asked him to apply for a full-time position as a processing associate. After he accepted the offer, the company worked with him to make sure he could perform his job duties effectively.
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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.
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Enter Stage Right
Matt Plummer, a 30-year-old graphic, web and thatrical designer in Fort Worth, Texas, will never forget the role that introduced him to the world of theater and art during his sophomore year of high school: Townsperson No. 3 in Arthur Miller’s The Crucible. “I think a lot of people in my situation have a hard time expressing themselves,” says Plummer, who lives with spinal muscular atrophy (SMA). “That experience really gave me a creative, artistic outlet to express myself and everything about me.”
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Disclosing Disability
Talking with employers about neuromuscular disease can be challenging. Given the broad spectrum of neuromuscular diseases and their often unpredictable nature, some may find it difficult to navigate exactly when and how much to disclose. “The very first thing a person needs to consider is why you want to disclose,” says Sharon Rennert, senior attorney advisor at the U.S. Equal Employment Opportunity Commission (EEOC). Doing so for the right reason at the right time keeps the focus on your performance as an employee, rather than on your disability.
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