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Quest Issue 2, 2022 -
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Recent Quest Articles
Running for a Reason
Ava Illingworth picked up running two years ago as an outlet to burn off some of the stress from her job installing software and interfaces for health care organizations. It wasn’t the most likely stress reducer for her, considering she has been living with Charcot-Marie-Tooth disease since she received the diagnosis in 2009 at the age of 35.
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Calling the Shots
Sports have always been a big part of Jermia White’s life. White, a 23-year-old sports statistician from Dallas who has spinal muscular atrophy (SMA), remembers watching her father coach basketball when she was 9 years old, and she went on to be a cheerleader, a manager for her high school basketball team and sports editor for her school’s newspaper. Before she went off to college, she knew she wanted to be involved with sports, but it wasn’t until she got to Dallas Baptist University that she figured out the right fit.
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MDA Muscle Walk: Moving Your Muscles
Members of the MDA community across the country have come together to walk a staggering amount in the name of neuromuscular disease research this year. In 2016 alone, there were:• 145 Muscle Walk finish lines crossed• More than 280 miles of Muscle Walk routes• 48 participating states• 363 hours of Muscle Walk events
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Flying High
Joe Feidt’s 40-year love affair with the sport of disc golf began as a happy accident. Feidt, a 66-year-old writer and editor for DiscGolfer magazine who has inclusion-body myositis (IBM), first discovered the sport in 1976 at a Frisbee tournament in Minneapolis. As it happened, one of his best friends from college was already on the pro Frisbee tour, and he encouraged Feidt to get involved.
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Walking Strong
When Tia Blankenship was diagnosed with Charcot-Marie-Tooth disease (CMT) in 2002 at the age of 23, she was told she wouldn’t be able to walk by the time she turned 35. This past April, at the age of 37, Blankenship walked both the 5K walk and the 1-mile walk at the MDA Muscle Walk of Tampa Bay (Fla.).
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Trial Run: Is Participating in a Clinical Trial Right for Me?
Clinical trials are research studies conducted to determine whether a medical strategy, treatment or device is safe and effective for use in humans. They can test medical products including drugs and devices, help discover more information about a disease, or evaluate procedures or behavioral changes such as diet or exercise.
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Challenging the Nation to Live Unlimited
MDA families face daily challenges that often make walking, playing, running, getting dressed, hugging and talking difficult — sometimes seemingly impossible. But these courageous families are defying their limits every day and inspiring a nation to do the same.For example, Davion Bartlett was diagnosed with Duchenne muscular dystrophy when he was 4 years old. He quickly learned as a young child that his disease would never define him or hold him back.
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Where to Stay When Away
The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair.
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Four Steps to Booking a Hotel Room for Wheelchair Users
As an avid traveler who happens to be a wheelchair user, I do my fair share of booking hotels. It's a complicated process that I've somewhat mastered over the years. While most people can just go online and book their ideal hotel in a matter of minutes, it's not quite that easy for us wheelchair users. I recently called a hotel to ask if they were accessible, and they told me that they certainly were.
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Earning Potential
Simon Cantos works hard at his job as an inside sales engineer for Carrier Corporation, a leading company in the heating, air conditioning and ventilation industry. “Engineering is extremely difficult, and I want to be compensated properly for what I do,” he says.Cantos, 33, who lives with Ullrich congenital muscular dystrophy (CMD), receives funding for dependent care from a state-sponsored program called Medical Assistance for Workers with Disabilities. He pays an out-of-pocket rate to stay in the program that provides funding for his personal care attendant to help with daily needs. The rate is based on a percentage of his salary and isn’t available once income thresholds are reached. Cantos says he is close to, but hasn’t yet exceeded, that ceiling.
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.
