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Caregiving: Task Masters

“The proper equipment helps reduce fatigue because it decreases the energy required for a routine task,” says Teri Krassen, an occupational therapist at the MDA Care Center at Good Shepherd Rehabilitation Hospital in Allentown, Pa. Health care professionals at MDA Care Centers can provide guidance in selecting products, train clients and their caregivers to use them, and give advice on individual issues or answer questions. According to Krassen, the best products help an individual and their caregiver find a balance between how much they can do independently and the amount of support needed from the caregiver. Some products allow individuals to be more self-sufficient, which can boost self-confidence and promote better relationships with caregivers.

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In Loving Memory of Jerry Lewis (1926-2017)

“The highlight of my time as MDA National Ambassador was interacting with Jerry. Not a moment could pass without an opportunity to laugh myself silly. Jerry Lewis will always be synonymous with pure dedication to a cause.” — Rocco Arizzi, National Ambassador 1979–1980, pictured above with Jerry Lewis

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Picture Perfect

Karen Condron’s passion for painting dates back to her first art lessons in 1968, but she only began showing her work at festivals in 2013, the same year she was diagnosed with bulbar-onset ALS. When ALS begins in the bulbar motor neurons, the muscles used for swallowing and speaking often are affected first.

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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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