November is National Family Caregivers Month!

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Recent Quest Articles

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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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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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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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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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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Where to Stay When Away

The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair. 

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Four Steps to Booking a Hotel Room for Wheelchair Users

As an avid traveler who happens to be a wheelchair user, I do my fair share of booking hotels. It's a complicated process that I've somewhat mastered over the years. While most people can just go online and book their ideal hotel in a matter of minutes, it's not quite that easy for us wheelchair users. I recently called a hotel to ask if they were accessible, and they told me that they certainly were.

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Earning Potential

Simon Cantos works hard at his job as an inside sales engineer for Carrier Corporation, a leading company in the heating, air conditioning and ventilation industry. “Engineering is extremely difficult, and I want to be compensated properly for what I do,” he says.Cantos, 33, who lives with Ullrich congenital muscular dystrophy (CMD), receives funding for dependent care from a state-sponsored program called Medical Assistance for Workers with Disabilities. He pays an out-of-pocket rate to stay in the program that provides funding for his personal care attendant to help with daily needs. The rate is based on a percentage of his salary and isn’t available once income thresholds are reached. Cantos says he is close to, but hasn’t yet exceeded, that ceiling.

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Seven Things Every New Mom Needs to Hear

Editor’s note: Read about Colleen Nichols’ experience of having a baby with a little help from technology in Love, Marriage, Science and a Baby Carriage. A college friend recently had her first baby, and after exchanging a few texts, I was reminded that there is a bit of new mom advice that every first-timer needs to hear. The days are long, and when you're unsure of what you're doing and experiencing, it's helpful to know that you're not the only one who thinks motherhood is hard.

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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 programs are only available in the U.S.

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