Latest Editions
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Quest Issue 2, 2022 -
Quest Issue 1, 2022 -
Quest Issue 4, 2021 -
Quest Issue 3, 2021
Recent Quest Articles
Love, Marriage, Science and a Baby Carriage
I’m not going to lie to you: Writing this article is making me sweat. I’m going to talk to you about a topic that changed my life in the most profound, positive way, but I still feel scared to share it. I was diagnosed with myotonic muscular dystrophy (MMD, or DM) when I was 20 years old. I had been dating my now-husband, Cory, for about a year, and I knew that he was the one. While I was head-over-heels and floating on cloud nine, I also struggled with a deep sense of dread and responsibility.
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Camp Connection
For Sylvia Colt-Lacayo, a high school freshman with muscular dystrophy from Oakland, Calif., attending her first MDA Summer Camp at age 14 was a revelation. “My favorite thing wasn’t even an activity, although all the activities were great,” she says. “It was the fact that it was a week where I never felt insecure about my wheelchair and the different things that happen with my body. I felt comfortable because everyone around me had similar issues or knew what it was like to deal with those issues. The only way I can describe it is basically for a week I get to accommodate the world, the world doesn’t have to accommodate for me.”
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Strike a Pose
Editor’s Note: Always consult with your MDA physician and MDA Care Center team before beginning any kind of exercise program. Twenty-eight-year-old Chelsea Singer is not the typical yoga instructor. Her feet are deformed as a result of contractures and stiffened joints. Her hands shake, her knees frequently dislocate, and she lacks sensation in her extremities. Diagnosed with Charcot-Marie-Tooth disease (CMT) at age 11, Singer grew up believing she was frail and found physical activity, such as hiking, painful.
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Home Smart Home
As the world awaits the full realization of the Internet of Things (IoT) — the computer- based platform on which all home automation will reside — the individual products and innovations that will one day comprise it are slowly trickling out. These smart home technologies will likely end up in all homes in the future; however, the difference in their effect on a typical homeowner compared to one living with muscular dystrophy, ALS or a related muscle- debilitating disease is the difference between additional convenience and a game-changing transformation.
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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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Camping Unlimited
There are so many noble reasons to be an MDA Summer Camp volunteer, and Elizabeth Barrett can easily chat up every last one. As a six-year veteran volunteer at the St. Louis-area MDA Summer Camp, now held annually at Pinecrest Camp in rural Madison County, she immediately launches into how MDA’s life-changing summer camps give kids with muscular dystrophy and related life-threatening diseases that limit muscle strength and mobility one blissful week when they can play and live unlimited in an environment without barriers.
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Investing in the Future
Dr. Chris Rosa, vice chairman of MDA’s Board of Directors and the University Assistant Dean for Student Affairs at the City University of New York, was among the speakers on hand to help launch MDA’s new brand in January. In his remarks that day, Dr. Rosa shared the story of his own journey with muscular dystrophy, starting with his diagnosis at age 9.
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Searching for Answers Across Diseases
The $11 million commitment, MDA’s largest such award in three years, underlines MDA’s dedication to investing in research across diseases with the expectation that increased understanding in one disease will inform progress and lead to research and medical breakthroughs in other disease spaces.
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.
