Recent Quest Articles
In Good Hands
All parents need time to themselves, but for BJ Mirabile of Winchester, Mass., finding child care for her daughter Katie, who has spinal muscular atrophy (SMA), often proved difficult. “When she was younger, we had some neighborhood sitters and sitters through early intervention,” Mirabile says. But early intervention services are for babies and toddlers with developmental delays or disabilities. Now Katie is older, and she uses a power wheelchair, BiPAP (bilevel positive airflow pressure) machine and MIC-Key gastric feeding tube.
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Advocate U
For many young adults, the college experience is a rite of passage and an exciting time for growth. This time comes with additional challenges and opportunities for the 9 percent of college students with disabilities in the United States. For some, it’s not just about the lessons that come from living away from their parents and families, making decisions about their future or navigating the world on their own. It’s also a chance to learn to advocate for themselves and others.
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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.
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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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A Good Beginning: Newborn Screening
For the first time in MDA history, we are seeing the development of specific drugs and therapies for the diseases in our program — many of which are the result of decades of MDA research. With potential new therapies in or nearing the approval stage, we are able to help infants with these diseases in a way never before possible: through a public health program called newborn screening (NBS).
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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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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.
