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Having a Ball

Eric Salzwedel, a 29-year-old marketing director for a Madison, Wis., nonprofit, became an MDA Summer Camp counselor by chance. When he was a senior in high school, he saw a flyer about Summer Camp in his guidance counselor’s office, and it caught his interest. His first day of camp coincided with his high school graduation, so after walking off the stage with his diploma, he jumped into his parents’ car and headed to camp.  

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Pushing the Limit

After running three marathons with MDA Team Momentum since 2014, Will Farr was ready for a bigger challenge. Farr had previously pushed his 14-year-old son, Owen, who has Duchenne muscular dystrophy (DMD), in a racing chair for a 4-mile race as part of a charitable initiative of the men’s workout group F3 Nation. In a video made to promote the initiative, Owen was asked if he thought his dad would push him in a marathon. Of course, Owen’s answer was “Yes,” and Farr decided to prove Owen right. In October, at the 2017 Marine Corps Marathon in Washington, D.C., Farr pushed Owen for the entire 26.2-mile race.

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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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Progress Now Fall 2017

Researchers are looking for people with ALS, as well as others with motor neuron disease, and healthy volunteers to participate in the Answer ALS: Individualized Initiative for ALS Discovery study, sponsored by Johns Hopkins University School of Medicine. Goals of the study include creation of a large repository of induced pluripotent stem cells (iPSCs), motor neuron cell lines and bio-fluid samples for comprehensive genetics and data analyses. The biological data collected for the trial will be combined with clinical measures of ALS symptoms and progression. 

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MDA Team Momentum: Running Strong

Every year, hundreds of endurance runners combine their passion for the sport with their passion for MDA, raising thousands of dollars for MDA. Matt Kendall (pictured above on the left), father of 5-year-old Archer who has Duchenne muscular dystrophy (DMD), raised more than $50,000 when he ran the United Airlines NYC Half-Marathon with MDA Team Momentum in March. 

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Disclosing Disability

Talking with employers about neuromuscular disease can be challenging. Given the broad spectrum of neuromuscular diseases and their often unpredictable nature, some may find it difficult to navigate exactly when and how much to disclose.  “The very first thing a person needs to consider is why you want to disclose,” says Sharon Rennert, senior attorney advisor at the U.S. Equal Employment Opportunity Commission (EEOC). Doing so for the right reason at the right time keeps the focus on your performance as an employee, rather than on your disability.

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In Sickness and in Health

Have you seen the ridiculous meme going around the internet that asks people if they would stay with their spouse if their spouse ended up in a wheelchair? Every time I see it, it makes my blood boil, especially when people hesitate with their answer. It is upsetting that this is even a question to be asked. Marriage is a commitment, and a disability should not change that. But not everyone sees it that way. Fortunately, my husband Russel and I both do.

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Career Starters

For Victoria Haire, landing a summer internship in the Dallas MDA office this year wasn’t simply a way to see what it was like to work in the business world; it was life-changing.Haire, who hails from Louisville, Ky., was diagnosed with limb-girdle muscular dystrophy (LGMD) at age 5. As part of her five-week internship with MDA, she got to work in an MDA Care Center alongside MDA’s family care specialists. “I knew right in that moment that this is what I need to do,” says Haire, 21, a University of Southern Illinois student studying communications with a minor in social work. “I texted my parents on the first day and said, ‘This is my calling.’”

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Caregiving: Choosing with Care

Amid the wave of anxiety and emotion that can accompany living with a neuromuscular disease, Bill and Sharon Sumner saw a few things clearly the day they learned of Sharon’s ALS diagnosis. “I knew we would keep her at home, and I knew I would be the one to take care of her,” Bill says. The Sumners were in a prime position to make such choices. Having sold his successful manufacturing business, Bill had the time to devote to his wife and the money to hire personal care attendants (PCAs) as her condition progressed. But for many families, when a diagnosis is made or a disease progresses to the point where daily care is needed, the decision isn’t as clear-cut. Financial means, work schedules, family dynamics and the extent of a support system are among the many factors that go into planning in-home care. 

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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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