
Latest Editions
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Quest Issue 2, 2022
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Quest Issue 1, 2022
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Quest Issue 4, 2021
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Quest Issue 3, 2021
Recent Quest Articles

Joe Akmakjian Continues as MDA National Ambassador in 2017
“2016 was such a powerful year with so many wonderful memories. I met a lot of amazing individuals and families from all over who are so excited about the direction we are headed — just like me. I also met so many staff who have a great passion for this cause. From top to bottom, this organization never ceases to amaze me.” — Joe Akmakjian
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Running Together
When Bryant Donnowitz first got involved with MDA, he didn’t have a direct connection to neuromuscular diseases. He was interested in helping MDA’s cause, but he didn’t know where to start, so he contacted his friend, April Tunnicliff, who is now MDA Team Momentum’s senior national endurance manager.
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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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Walking Strong
When Tia Blankenship was diagnosed with Charcot-Marie-Tooth disease (CMT) in 2002 at the age of 23, she was told she wouldn’t be able to walk by the time she turned 35. This past April, at the age of 37, Blankenship walked both the 5K walk and the 1-mile walk at the MDA Muscle Walk of Tampa Bay (Fla.).
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Landmark Decision Brings Hope for Continued Progress, Momentum in 2017
An important win for all individuals and families living with muscular dystrophy, ALS or one of the related neuromuscular diseases that MDA fights occurred Sept. 19, 2016.The U.S. Food & Drug Administration (FDA) granted accelerated approval to eteplirsen (brand name Exondys 51) for the treatment of some forms of Duchenne muscular dystrophy. This is an outcome MDA dreamed of decades ago when we first invested in the research to identify the cause of DMD and then took the risk to be the first to invest in a breakthrough exon skipping research project that led to development of this drug (see Progress Now). It is the first of what we know will be many disease-modifying drugs for DMD.
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Champion the Cause
Are you excited about the progress we are making in bringing strength, independence and life to individuals with neuromuscular diseases and their families?This holiday season, please remember to put MDA on your list. Please join us in supporting the important work being done to find research breakthroughs across diseases that accelerate treatments and cures; care for kids and adults from day one at more than 150 MDA Care Centers; and empower families with services and support, including equipment assistance, support groups and MDA Summer Camp for kids.
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.