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Keeping Families at the Heart of MDA’s Mission

This is a busy and productive time for MDA and the families we serve. The unprecedented approval of three new drugs in six months to treat diseases in our program — after many years of investments with no new drugs — is proof that this is a time of great momentum in neuromuscular research. At MDA, we’re building on this progress as we push to do more to help families like yours in hometowns across America. As proof of our commitment to keep you at the heart of everything we do, here are some updates on new initiatives we’re developing for you and your family: 

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Progress Now Spring 2017

Researchers are looking for 220 people with ALS and 30 people who do not have ALS from around the country to participate in the ALS AT HOME (ALS Testing through Home-Based Outcome Measures) study. The aim of the study is to assess whether ALS patients can reliably measure disease progression from home, with the goal of changing the way clinical trials for ALS are performed. The hope is to be able to reduce the number of patients that have to be enrolled in a trial in order to reduce the length of the testing process. In addition, if the study shows that individuals with ALS are able to reliably measure their disease at home, future trials could be designed to include patients who do not live near a study center.

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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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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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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 programs are only available in the U.S.

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