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Recent Quest Articles
Access MDA Spring 2016
Dennis Bracety had been fighting fires in Tucson, Ariz., for almost 10 years when he first started to experience symptoms of what he would eventually find out was dermatomyositis, a neuromuscular disease that causes inflammation of the muscles and skin.“My symptoms started in November 2010 at our annual Turkey Bowl Thanksgiving event,” Bracety says. “I felt sluggish, and I didn’t feel alert. Something was off, and I knew it. For the next three weeks I ignored the symptoms; I’m a macho guy, I figured I would be fine. It wasn’t until Christmas Eve [that I recognized something was seriously wrong] when I was on duty, and I just couldn’t get out of bed.”
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Strength in Numbers: ALS Allies
“If I had all my physical strength and everyday freedoms from before being diagnosed with ALS, I would want to give one more bear hug and kiss to each of my girls. Being able to physically pick them up and squeeze them in my arms is what I miss most in life. MDA and its wonderful, compassionate and helpful staff are an essential and integral part of my life, as well as others like mine." — Keith Gawrick, father of three daughters who is living with ALS
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Progress Now Spring 2016
Researchers are looking for people with ALS to participate in a phase 1 clinical trial, sponsored by Biogen and Ionis Pharmaceuticals, to test the experimental drug Ionis-SOD1Rx. Ionis-SOD1Rx is designed to block production of flawed SOD1 protein in people with ALS caused by defects in the SOD1 gene. It is administered by intrathecal injection, in which a small needle is inserted into a space in the lower back below the end of the spinal cord in a medical procedure commonly referred to as a “lumbar puncture.”
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Keeping Families at the Center of Our Mission
One of the most enjoyable privileges of my role is visiting with MDA families we proudly represent and are committed to serving. You are at the heart of everything we do at MDA. You’ve heard us say that, but what does it mean to families like yours? Earlier this year, MDA launched a revitalized brand to better reflect the voices and needs of families and a bold plan to enhance the research, care and support we provide to you. This includes the experience and care you receive at MDA Care Centers (formerly called MDA Clinics) in hometowns across America.
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The Heart of Our Mission
Joseph (Joe) Akmakjian, who was diagnosed with type 2 spinal muscular atrophy (SMA) when he was 15 months old, will turn 25 this year. In 2015, to celebrate his 24th birthday and doubling his life expectancy, he didn’t have the standard cake and ice cream with friends and family. Instead, he and 11 friends went skydiving to mark the occasion. Akmakjian was securely strapped to his skydiving instructor, wore a neck brace, and his arms were restrained across his chest. As he got ready to feel the wind on his face at 120 miles per hour, he shouted, “YOLO!” short for “You only live once.”
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Progress Now Winter 2016
At MDA, we take a big picture perspective across the full spectrum of neuromuscular diseases to uncover scientific and medical breakthroughs that accelerate treatments and cures. The power in our research approach is that we can often apply learnings from one disease to progress in others to bring urgently needed answers to our families. Take a look at what's happening in research and clinical trials for Winter 2016.
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Leading by Example
American author, speaker and salesman Hilary Hinton “Zig” Ziglar once quipped, “You can have everything in life you want if you will just help enough other people get what they want.” For Mike Rowlett, these words are more than a nice sentiment; they are a personal philosophy that he lives by every day. And he credits that ethos with helping him achieve what he calls “a blessed life” with his wife, Beverly, and their blended family.
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An Attitude of Gratitude
Life is certainly full of surprises, isn’t it? Just when you think you’ve figured things out, you round a curve and — surprise — you hit a detour!Being diagnosed with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease, in 2012 at age 55 was a most unwelcome detour, to put it mildly. We were not completely taken by surprise since it had been clear something was wrong with me for quite some time. When tests and clinical observations eventually ruled out everything else, we were faced with the awful truth: I had a disease that would take away my mobility, my independence and, eventually, my life. Scientists are working hard to find answers. But as I write this, there is no effective treatment or cure for ALS.
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A Passion for Helping Others
The reward of giving back isn’t something 23-year-old Brandi Hawkins focuses on as she embarks on a career in social work. She just wants to help people. “There are so many people out there who are in need of special resources that aren’t aware of how much the system can assist them,” she explains. “Social workers tend to be a voice for those in need.”
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At Your Service
Eric Cook, who has limb-girdle muscular dystrophy (LGMD) and uses a power wheelchair, no longer struggles to pick up the TV remote or his glasses when he drops them on the floor. Instead, the 57-year-old retired engineer relies on his service dog, Dusty, to help him with these and other needs. In total, Dusty knows and responds to 40 different commands for everyday tasks like turning on a light switch, pushing an elevator button or opening the refrigerator door. When Cook begins to slump in his wheelchair, he even has a command for Dusty to gently nudge him back into an upright position.
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.
