For Dayniah Manderson, a teacher, writer and mother with spinal muscular atrophy (SMA) from New York City, being in a pageant at age 37 wasn’t really on her radar. But when she received a nomination for Ms. Wheelchair NY 2017, she was taken aback — at first.“Initially, I was disinterested because I didn’t know what the world of pageantry is about,” she says. “But after someone contacted me and explained it to me, it became more appealing. They had to do a little convincing, but ultimately I appreciate them pushing me to do it.”
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College is a blast, but it can come with a pile of challenges the size of a mountain. Just look at the hundreds of articles there are advising students on how to conquer stress, manage time and deal with that one professor who may as well have been stripped from an ‘80s movie. College can be the best — and the most draining — time in a person’s life.
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Emergency situations present real challenges for individuals affected by neuromuscular diseases. For example, in February, when the Oroville Dam threatened to fail in California, downstream residents were given just one hour to leave their homes. Local news reported that a resident with a disability was left behind for hours due to lack of accessible transportation.
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At MDA, we believe our limits do not define us. Limits are meant to be overcome. Turning perceived limits into unlimited opportunities means different things to all of us. For some, living unlimited means taking on an extraordinary challenge, like summiting a mountain or skydiving. For others, it means making a new friend, going to college or pursuing a career goal. What these moments have in common is a sense of confidence and a willingness to live beyond what some may see as physical or societal limits created by living with a neuromuscular disease.
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Like many teenagers, Casey Stark wanted to learn to drive when she turned 16. But living with spinal muscular atrophy (SMA) and using a power wheelchair meant that preparing for and completing a driving test required extra planning.Stark, who was a high-performing high school student, knew she could pass a written test, but she wondered how she was going to get behind the wheel. The cost of adapting a vehicle with hand controls and other driving aids was prohibitive, and she didn’t need to drive to manage her day-to-day student activities, so Stark put that dream on hold.
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Purchasing a vehicle can be a daunting experience for many people. Choosing one that accommodates an individual who uses a wheelchair often presents an additional layer of decision-making. When you are ready to buy an accessible vehicle, be prepared to ask and answer a lot of questions. The process typically begins with an evaluation by a certified driver rehabilitation specialist (CDRS). A CDRS conducts an assessment of your abilities and limitations, provides driving instruction and can collaborate with a mobility dealer to determine which vehicle and equipment is the best fit.
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When he was younger, Andrew Baker, a 21-year-old junior at Brandeis University in Waltham, Mass., who has Charcot-Marie-Tooth disease (CMT), knew he wanted to compete. He tried baseball and soccer, but found that with his CMT he was unable to be a competitive player. Serendipitously, he was recommended swimming as a form of physical therapy, and with some encouragement from his younger sister who also has CMT, he decided to try swimming competitively.
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Kierra Sunris, a typical 12-year-old, enjoys reading The Hunger Games, making silly faces to annoy her parents and riding horses. She rode for the first time at age 6. “I was afraid the horse would fall over. It’s kind of scary when you get on top of something that’s five feet taller than you are,” says Kierra, who has Ullrich myopathy (a form of congenital muscular dystrophy) and uses a power wheelchair.
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When Brenda Allen’s son, Tyler, was diagnosed with Duchenne muscular dystrophy (DMD), the family had just closed on a home. Although Tyler was only 3, they immediately knew that the house wouldn’t work. It lacked many accessible features, like a bedroom on the first floor and a large bathroom to accommodate a wheelchair.
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A few years ago, Michele Boardman was ready to move into her first apartment. But Boardman, 30, who lives with limb-girdle muscular dystrophy (LGMD), had several factors to consider besides rent and location. She had to find a place that would accommodate the modifications she needed: a front door with a number-pad lock, doors removed from her bedroom and bathroom for easy wheelchair access, under-sink cabinet doors removed for knee space and a barrier-free shower.
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