Education

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.’”

Surviving and Thriving in College

College is a blast, but it can come with a pile of challenges the size of a mountain. Just look at the hundreds of articles there are advising students on how to conquer stress, manage time and deal with that one professor who may as well have been stripped from an ‘80s movie. College can be the best — and the most draining — time in a person’s life.

Education Essentials

Some students with complex physical or cognitive needs have Individualized Education Plans (IEPs), and some have 504 plans (named for Section 504 of the Rehabilitation Act of 1973), while others may not elect to use these plans. Both plans are intended to assist students in gaining access to a free appropriate public education, but there are differences between the two methods. Here are some tips on how to choose a plan and implement it to improve your child’s educational experience.

College Connection

Living with Duchenne muscular dystrophy (DMD) since the age of 2, Thomas Roy has seen the disease progress throughout his life. While he had always wanted to attend Rutgers University in New Brunswick, N.J., he assumed he would never be able to do so because of his living situation. However, when Roy found out about the online degrees Rutgers offers — and that the university would accept transfer credits from the community college he attended — everything changed.

Achieving Through Adversity

I have read many articles about people succeeding despite their disabilities, but I believe people can succeed because of their disabilities. The adversity I faced navigating academic and professional challenges as a person with a disability paved the way for the satisfying life I enjoy now. Here I sit, a law clerk for a federal judge preparing to begin private practice at a patent litigation firm, living with a cat in my own apartment and supported by friends and family. The bumps in the road made me a tougher, smarter person and helped me sharpen the skills I use every day as an attorney.

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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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