Quest Winter 2017 | Muscular Dystrophy Association

Featured Articles

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.

Focus on Wellness: Get Moving

Some individuals consider exercise a four-letter word, while others can’t seem to get enough. Whatever your feelings, the research shows that physical activity is good for everyone. Inactivity can lead to secondary health problems, such as high blood pressure and diabetes. A lack of exercise can quickly put on the pounds. Weakened muscles burdened with added weight is a double whammy.

Focus on Wellness: Getting Your ZZZs

Sixty percent of Americans have trouble sleeping, according to the National Sleep Foundation. For individuals with neuromuscular diseases, that number is likely higher, because disease-related factors, including limited mobility and respiratory problems, can make it difficult to achieve deep, restful sleep.

Shamrocks Spirit

This year marks the 35th anniversary of MDA’s Shamrocks fundraising partnership with retail stores across the country. To get in the Shamrocks spirit, we’d like to introduce you to some of the kids featured in this year’s campaign, which kicks off in February. Meet Gabrielle, age 14 When Gabrielle was diagnosed at the age of 1 with type 2 spinal muscular atrophy, her parents were told she wouldn’t see her third birthday. Now 14, Gabrielle is thriving and doesn’t allow anyone or anything to stop her from doing what she loves. She attended MDA Summer Camp for the first time in 2016, and her favorite memory was being able to go horseback riding.

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.

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

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.

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.

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.

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.

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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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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