Quest Fall 2017 | Muscular Dystrophy Association

Featured Articles

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.

Pushing Their Limits

In 2014, two lifelong friends set off on a journey that, in addition to deepening their friendship and teaching them life lessons, would eventually inspire a book, speaking engagements and a documentary called “ I’ll Push You,” which is premiering November 2. Justin Skeesuck and Patrick Gray have been friends since birth. When Skeesuck was 16 years old, he began to feel the effects of a rare form of neuromuscular disease.

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.

MDA Offers LGMD Genetic Testing Program

MDA families are at the heart of all we do. To help provide the MDA families we serve with the best possible care and support from day one, we are pleased to announce the continuation of the limb-girdle muscular dystrophy (LGMD) genetic testing program, thanks to additional support from Sanofi Genzyme.

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

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.

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.

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.

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.

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.

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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