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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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School Spirit

Between working as a resident assistant, being the philanthropy coordinator for her sorority Alpha Gamma Delta, acting as the 2016 Greek Sing Director, planning a study abroad trip to Australia and volunteering for other organizations, it’s hard to believe that Sarah Bellish, a sophomore at Baldwin Wallace University (BWU) who has spinal muscular atrophy (SMA), still has the time to advocate for improved accessibility on her college campus. 

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Landmark Decision Brings Hope for Continued Progress, Momentum in 2017

An important win for all individuals and families living with muscular dystrophy, ALS or one of the related neuromuscular diseases that MDA fights occurred Sept. 19, 2016.The U.S. Food & Drug Administration (FDA) granted accelerated approval to eteplirsen (brand name Exondys 51) for the treatment of some forms of Duchenne muscular dystrophy. This is an outcome MDA dreamed of decades ago when we first invested in the research to identify the cause of DMD and then took the risk to be the first to invest in a breakthrough exon skipping research project that led to development of this drug (see Progress Now). It is the first of what we know will be many disease-modifying drugs for DMD.

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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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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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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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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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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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MDA 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 services are only available in the U.S.