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Quest Issue 2, 2022 -
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Recent Quest Articles
All in a Day's Work
Going from being a high school or college student to an independent, working adult can be challenging for almost anyone. But for individuals who live with neuromuscular diseases, the transition into the workforce can be especially overwhelming. But young adults in the MDA community who have successfully made this employment leap agree that the rewards of meaningful work are worth the challenges they’ve faced en route to establishing thriving careers.
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Follow the Biomarkers
Imagine being in a strange city. You’re driving to the airport to catch a flight. Now suppose every street sign and traffic light you see is covered in paint. Which way do you turn? You look at your dashboard. All the indicators are covered in paint, too. Is the tank full or empty? Is the engine hot? Should you go faster? Slower? Or stop altogether?
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Strength in Numbers
In their jobs, fire fighters save lives every day. But they also personify strength and courage off the clock.Consider the Fill the Boot (FTB) campaign, the long-standing fundraising partnership between MDA and the International Association of Fire Fighters (IAFF). Each year, members line street corners to collect money — in their boots — from neighbors and passersby.
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Access MDA Fall 2015
“There isn’t a day that goes by where Bryce doesn’t apologize for ‘being the way he is’ or for having to ask for help. As a mother, it simply breaks my heart that Bryce feels this way, and there isn’t much I can do to help him feel better, nor [do I] have a good answer to his questions. But I can be fierce and try to raise as much money as possible so he can go to MDA Summer Camp, where for six days these questions never enter his mind.
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Overcoming the Unknown
Have you ever felt trapped, isolated or suffocated by transportation-related issues? I’m sure those of you who use a wheelchair, like I do — I have spinal muscular atrophy — or rely on some other form of mobility aid have felt these things a time or two. I know I have. But in the past couple of years, I’ve been determined to face my greatest fear, which includes transportation and so much more: risk-taking.
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ADA 25th Anniversary
On July 26, 1990, President George H.W. Bush signed into law landmark civil rights legislation called the Americans with Disabilities Act (ADA), which is intended to eliminate barriers for people with disabilities. The law mandates that individuals with disabilities have equal access to public accommodations, employment, transportation, state and local government services, and telecommunications.
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Home, Sweet Modified Home
From navigating tight bathroom spaces to working your way through a long hallway, homes can present many challenges when it comes to mobility and accessibility for those with neuromuscular disease.Making large-scale modifications is always an option, but with the cost of renovations, it’s worth pursuing budget-friendly strategies first, says Amber Ward, occupational therapy coordinator at Carolinas HealthCare System, which houses the MDA/ALS Center at Carolinas Medical Center.
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MDA Transitions: A Bright Future
“I was already signed up for Duke, and was wait-listed for Yale, but waiting for Harvard. When I opened the Harvard letter, I got the shock of my life, and that was it!” says 17-year-old Caroline Zheng on being accepted to her dream school, Harvard, where she’ll start classes in the fall. For Zheng, who has congenital muscular dystrophy (CMD), and for many young adults who live with a neuromuscular disease, college isn’t just a means to pursue academic and career success; it’s also an empowering step toward a more independent adult life.
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Access MDA Spring 2015
A True Advocate: Kristin Stephenson, MDA’s new vice president of Policy and Advocacy, discusses her new role and her personal connection to MDA Kristin Stephenson, an accomplished lawyer and disability advocate, was announced as MDA’s new vice president of policy and advocacy earlier this year. Stephenson has worked in the clinical, consulting, administration and legal sectors of the health care industry. Beyond her vast experience with health care issues, she also has a personal connection to MDA’s cause.
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Women and Wellness
Katrina Gossett, 29, has only had one gynecologic (pelvic) exam in her life, and it’s not an experience she’s eager to repeat. Gossett, who has spinal muscular atrophy (SMA) and uses a power wheelchair, is an Indianapolis attorney who is used to taking charge of things. But the pelvic exam she had a few years ago was daunting to say the least.
Read MoreMDA 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.
