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
Finishing Strong at MDA Muscle Walk
Every year in hometowns across America, MDA Muscle Walk participants of all ages and abilities make their way through a 1- to 3-mile wheelchair friendly course for a good cause. But this is more than a fundraising walk. Here are excerpts from the Strongly blog about why people participate in this life-changing event.
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From Self-Denial to Self-Acceptance
I was diagnosed with spinal muscular atrophy (SMA) at 18 months. I was pretty fortunate that my doctors said that I looked strong, and the quality of my life would be determined by every milestone I surpassed. However, they couldn’t foresee how I’d react to my own disability throughout life. When I was young, all I wanted was to be what I considered “normal” or “typical.” I wanted to be like everyone else. With that said, I was blessed with two parents and other special people in my life who always told me I was beautiful, I could be anyone I wanted to be, and my disability never had to define me because I could define it. But my own voice said differently.
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Progress Now Fall 2016
In August, MDA awarded nearly $7 million in new research grants, supporting 25 new research projects around the world to accelerate treatments and cures. With 41 grants awarded earlier this year, MDA’s investment in new neuromuscular disease research projects totals more than $17 million for 2016.The new research projects underway are expected to build learnings and create positive outcomes that cross disease borders and impact the greater neuromuscular disease landscape.
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Running Wild
By the end of this summer, Abel Alejandrino had already run two marathons and an ultramarathon in support of MDA. He had covered more than 100 miles — and he was just getting started. Alejandrino intends to run at least two more marathons this year as part of MDA Team Momentum, including the Bank of America Chicago Marathon in October and the Dallas Marathon in December.
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Living Social
Months after Staci Hayes gave birth to her daughter, she began to suspect her extreme exhaustion was not normal. “How I felt went beyond [the idea that] I have a newborn and I’m tired,” says Hayes. After consulting with doctors and undergoing a range of testing, Hayes received a diagnosis of myasthenia gravis (MG). At the age of 40, every aspect of her life changed. Her 20-year career as a nurse ended, her marriage fell apart, and she became a single parent with a 3-year-old child.
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The Heart of Care
When a couple vows to share their lives — whether or not they express that commitment before an authorized officiant — there’s a traditional phrase that holds particular pertinence when one partner is both mate and primary caregiver for the other. It’s the line about loving one another for better, for worse, for richer, for poorer, in sickness and in health.
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Independent Pro
Like many of us, 25-year-old Lauren Carter’s path to her chosen career took a few turns along the way.“I was definitely one of those students all throughout high school who was constantly changing my mind about what I wanted to do with my life,” Carter says. She considered becoming a doctor or a lawyer, as well as a cook, even though she admits to being terrible at cooking.
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Clinical Trials: Preparation Tips and Questions to Ask
• Why do I want to participate in the clinical trial?• What are my goals and expectations if I were to be selected? • How could this impact me if I do participate in the trial? How will this impact me if I do not participate?• Have I weighed the benefits versus the risks? About the trial:
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Types of Clinical Trials
When a new product or approach is being studied, it is not usually known whether it will be helpful, harmful or no different than available alternatives. Investigators try to determine the safety and efficacy of the intervention by measuring certain outcomes in the participants. Phase 0 — Also known as “exploratory studies,” these trials test a small dose of a new drug in a few people as researchers explore how the drug may work in humans and ensure that it is safe. Trial participants may or may not have the disease the drug has been developed to treat.
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Smart Assistive Mobility Products
Keeping pace with the latest assistive mobility products is a tall order. The marketplace is so dynamic, so innovative, so accelerated; it can be impossible to stay on top of what’s new, what’s different, what’s covered by insurance or what will enhance your mobility and independence. This edition of “Innovation” catches up with some of the smartest assistive mobility products on the market now, as well as tips for selecting the right types to meet your needs.
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.