Featured Articles
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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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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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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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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Champion the Cause
Are you excited about the progress we are making in bringing strength, independence and life to individuals with neuromuscular diseases and their families?This holiday season, please remember to put MDA on your list. Please join us in supporting the important work being done to find research breakthroughs across diseases that accelerate treatments and cures; care for kids and adults from day one at more than 150 MDA Care Centers; and empower families with services and support, including equipment assistance, support groups and MDA Summer Camp for kids.
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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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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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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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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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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.
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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 services are only available in the U.S.
