Recent Quest Articles
Learning by Heart
Keilondi Johnson, a 39-year-old teacher from Virginia, who has spinal muscular atrophy (SMA), always wanted to work with children. When she got to college, she thought she wanted to go on to study the law and become a family lawyer. However, that changed when Johnson took on an internship at a campus day care center as part of her studies.
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Passion Projects: Q&A with Author and Filmmaker Crystal Emery
Author, producer and filmmaker Crystal Emery, who has Charcot-Marie-Tooth disease (CMT), wrote and directed her first play in the fifth grade, and she hasn’t stopped telling stories since then. She’s currently touring the country with her documentary film, “Black Women in Medicine,” which can be seen on PBS, and her foundation, URU, The Right To Be Inc. Quest spoke with Emery over the phone about the film, her passion for the arts and more.
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Spreading Love
In 2004, when Stevie Hopkins, a 33-year-old entrepreneur who has spinal muscular atrophy (SMA) and his sister, Annie, who also had SMA, put a wheelchair heart design on a pub crawl T-shirt, he never imagined it would eventually turn into a business that employs himself and more than 20 other employees, including a half-dozen employees with disabilities.
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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 Muscle Walk: Mary’s Marathon
It took a while for Colleen Stratton and her husband, Charlie, to process the news that their daughter, Mary Grace, who is now 5, was diagnosed with limb-girdle muscular dystrophy (LGMD) in June 2014. “The shock was settling in, and I was almost in denial,” Colleen says. But in the year that followed, the Strattons found support by engaging with their local MDA community. They made their MDA Muscle Walk debut with a bang at the 2016 Muscle Walk of Cincinnati last April, where their team, Mary’s Marathon, was more than 100 strong.
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The Latest from the Lab
You probably enjoy visiting MDA's Strongly blog to read personal stories from people living with neuromuscular diseases — but did you know you’ll also find updates and information straight from the mouths of the researchers who are working to uncover scientific and medical breakthroughs? Here are some excerpts from Strongly.
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Progress Now Winter 2017
Osaka-based Mitsubishi Tanabe Pharma’s new drug application for the drug edaravone (brand name Radicava) to treat people with ALS has been accepted by the U.S. Food and Drug Administration (FDA).An FDA decision on the drug is expected by June 16, 2017. Edaravone was approved last year in Japan and South Korea for the treatment of ALS and has been approved for the treatment of stroke since 2001.
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Finishing Strong at MDA Muscle Walk
Every year in hometowns across America, MDA Muscle Walk participants of all ages and abilities make their way through a 1- to 3-mile wheelchair friendly course for a good cause. But this is more than a fundraising walk. Here are excerpts from the Strongly blog about why people participate in this life-changing event.
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From Self-Denial to Self-Acceptance
I was diagnosed with spinal muscular atrophy (SMA) at 18 months. I was pretty fortunate that my doctors said that I looked strong, and the quality of my life would be determined by every milestone I surpassed. However, they couldn’t foresee how I’d react to my own disability throughout life. When I was young, all I wanted was to be what I considered “normal” or “typical.” I wanted to be like everyone else. With that said, I was blessed with two parents and other special people in my life who always told me I was beautiful, I could be anyone I wanted to be, and my disability never had to define me because I could define it. But my own voice said differently.
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Progress Now Fall 2016
In August, MDA awarded nearly $7 million in new research grants, supporting 25 new research projects around the world to accelerate treatments and cures. With 41 grants awarded earlier this year, MDA’s investment in new neuromuscular disease research projects totals more than $17 million for 2016.The new research projects underway are expected to build learnings and create positive outcomes that cross disease borders and impact the greater neuromuscular disease landscape.
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