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The Power of Role Models

In recent months, I’ve experienced a noticeable decline in my arm and leg strength. My limbs feel heavy. It seems like they succumb a little bit more to gravity each day. One night, I tried to roll over in bed, and it took me six attempts — six! — to succeed. By the time I finally flipped over, I felt like I had just gone to the gym.

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A World of Opportunities

In 2010, Darrin Altman, diagnosed with ALS, faced a professional dilemma. His speech was failing, which threatened his career as a Spanish-language court interpreter. “My doctors at UCLA recommended an app to help me communicate, which worked OK, but not perfectly,” Altman recalls. After testing several alternatives, he decided that the solution was to create his own full-featured text-to-speech app, which he would offer to the world for free. 

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Enter Stage Right

Matt Plummer, a 30-year-old graphic, web and thatrical designer in Fort Worth, Texas, will never forget the role that introduced him to the world of theater and art during his sophomore year of high school: Townsperson No. 3 in Arthur Miller’s The Crucible. “I think a lot of people in my situation have a hard time expressing themselves,” says Plummer, who lives with spinal muscular atrophy (SMA). “That experience really gave me a creative, artistic outlet to express myself and everything about me.”

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MDA Muscle Walk: Walking the Walk

“That encouraged us to start early this year,” Nash says. “And we ended up being No. 4 in the nation.” Team Matthew raised more than $24,000 this year through many different avenues: social media, the family’s friends and relatives, and Nash’s work in the wine industry. Beyond feeling great about raising money for a cure, the experience of being at the MDA Muscle Walk of St. Louis provided the family with fond memories. 

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Game On

Participating in a clinical trial often means meeting some stringent requirements. One common requirement is the six-minute walk test, which measures the distance walked in six minutes and which may be used to help determine whether a drug is having an effect. This requirement can be a challenge for some individuals with neuromuscular diseases.

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Partners in Progress

Since 2006, Casey’s General Stores have supported MDA through MDA Muscle Team and the MDA Summer Camp Pinup Campaign, which lets shoppers purchase a $1 or $5 pinup (which includes a 7UP coupon) to display in the store. Over the past 10 years, Casey’s stores have raised more than $8 million with this campaign, including $1.5 million in 2016 alone. 

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Support System

When Cindi Reamer, a 58-year-old auditor and coder with limb-girdle muscular dystrophy (LGMD) was a child in Fort Wayne, Ind., she told her orthopedist that she wanted to work for him one day. At age 20, she did just that. Steven Glock, M.D., hired her as a telephone switchboard operator, and she has been working in his practice ever since, moving from the switchboard into coding.

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Carry On

For Ed Walsh, who has been a U.S. Postal Service letter carrier for 23 years, getting involved with MDA came naturally. Walsh is a member of the National Association of Letter Carriers (NALC) Branch 358 in New York. NALC was one of MDA’s first national sponsors, originally partnering with MDA in 1952. Beyond that official partnership, Walsh and his fellow branch members have found personal connections to MDA. 

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Flying High with Kippy

When Christine “Kippy” Hoene, a 57-year-old acrobat and entrepreneur with facioscapulohumeral muscular dystrophy (FSHD), first opened her SaltAer circus school in Jacksonville, Fla., earlier this year, it represented a culmination of her passions. At age 35, Hoene decided she wanted to learn a new skill every year, and after seeing Cirque du Soleil perform in Las Vegas, she set out to learn acrobatics. 

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Going for the Gold

This July, four athletes with neuromuscular diseases competed in the Federation Internationale De Powerchair Football Association (FIPFA) World Cup for Team USA, which came in second place overall. Jordan Dickey, Natalie Russo, Ben Carpenter and Nathan Mayer all competed in the tournament, which pits teams of four individuals operating wheelchairs with wheel guards against each other in a game commonly called power soccer. The goal is to maneuver your team’s ball into the other team’s goal through dribbling, passing and shooting. 

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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.

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