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Quest Issue 2, 2019 -
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Quest Fall 2018
Recent Quest Articles
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.
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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.
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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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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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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 services are only available in the U.S.
