Staying Active

View From the Top

Hiker Skye Lemmen raised funds for MDA while trekking the Pacific Crest Trail When Skye Lemmen, of Grand Rapids, Michigan, decided to hike the Pacific Crest Trail, she knew she wanted her endeavor to support MDA and the neuromuscular disease community. So, while hiking the approximately 2,650 miles of trail, which extends from the Mexican border to the Canadian border in the Western United States, Skye raised more than $5,000 for MDA through Donor Drive. Inspired by her dad, who lives with facioscapulohumeral muscular dystrophy (FSHD), Skye wanted to support MDA for the assistance her family has received over the years.

2021 Reader Photo Contest Winners

Congratulations to 2021 Lasting Impression Photo Contest winner Leslie Crowley Jr., 27, of Atlanta, Georgia.This photo shows Leslie, a former MDA Summer Camper who lives with Duchenne muscular dystrophy (DMD), in his natural element, with his music equipment behind him in his home studio. A lifelong music lover, Leslie produces music under the name J0K3 (find him on social media @jokemusic3).

Living Creatively

In my childhood I was a creative kid with an active imagination. I loved to play pretend with my friends. I attended art clubs and sang in the school choir. I daydreamed and made up stories in my head.But as my imagination grew, my body deteriorated. I was diagnosed with Becker muscular dystrophy (BMD) at age 10. As I grew older, my muscles became progressively weaker. I couldn’t run in gym class. I fell in the hallways at school and came home with cuts and bruises. After a particularly bad fall in which I busted my chin on the floor, my high school advised my parents to get me a wheelchair for my safety.

One Bike, Four Stories

Chris Benyo planned to push his wife, Denise, who lived with amyotrophic lateral sclerosis (ALS), over the finish line in her racing wheelchair, or duo bike, in the Bank of America Chicago Marathon in 2016. When she passed away before the race, he pushed the bike filled with mementos of her instead. He crossed the finish line holding Denise's photo. After the race, he donated the bike to MDA's Team Momentum.

MDA Q&A: Top of Mind

You don’t have to navigate your neuromuscular disease journey alone. The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ top questions. Q: I have oculopharyngeal muscular dystrophy (OPMD). Is COVID-19 vaccination safe for people with neuromuscular disease? Are there any side effects?

Affordable Accessibility at Home or On the Go

Whether converting a van for wheelchair access, modifying a shower, or widening doorways, maximizing accessibility is at the top of the to-do list for many individuals and families living with neuromuscular disease. However, the cost and the difficulty of planning these changes keep many people from checking those items off their list.

Smashing Stereotypes

We all know sororities have a stereotype: skinny girls with blonde hair and blue eyes. I have never seen a disabled sorority girl.Despite that stereotype, I knew I wanted to be a part of Greek life when I started my freshman year at Central Michigan University (CMU) in fall 2019. I signed up for formal recruitment as soon as registration opened.

All in the Family

Within our family of five, my daughter and I have a neuromuscular disease called scapuloperoneal spinal muscular atrophy (SPSMA). I was born with this rare motor neuron disease, and our precious Leah inherited the same disease; however, this is not what makes us unique. What makes our family uncommon is our relentless dedication to accomplishing tasks collectively.

Game On!

On March 21, MDA launched Game Night, a weekly Saturday night event designed to gather online gamers and families for regular connection (and a little healthy competition).It couldn’t have been better timed.MDA began developing its online gaming platform, MDA Let’s Play, in 2019. The idea was simple: connect the online gaming community and the MDA community — which already overlap — to grow a new network of support. And now, as families have found themselves practicing social distancing from friends, neighbors, and family, there’s no better time to go online for a bit of fun together in support of MDA’s cause — and maybe to build the most amazing Minecraft village in history while they’re at it.

7 Ways to Make Life at Home Easier

Now, more than ever, we’re spending a lot of time at home. While the continuing threat of the novel coronavirus makes this the safest place to be, home is also a place where frustrations can multiply when trying to accomplish everyday tasks.We chatted with experts and people living with neuromuscular diseases to get tips on how to ease some common struggles so you can truly feel the comforts of home.

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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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