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Recent Quest Articles
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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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.
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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.
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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.
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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.
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.
