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Recent Quest Articles
Progress Now Winter 2018
In November, MDA announced 13 new MDA research and development grants, with a total funding commitment of $3.5 million, that are now supporting research projects around the world. The new projects cover a broad range of diseases in MDA’s program and are intended to impact the greater neuromuscular disease landscape.
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Meet MDA’s New President & CEO
Global health care leader Lynn O’Connor Vos joined the Muscular Dystrophy Association last fall as its new president and CEO. With a clinical nursing background and decades of experience building and leading health companies to drive technology and innovation in patient care, Lynn says her entire career has led to this unprecedented moment with MDA.
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From Summer Camp to Shamrocks
When Whitney Jorgensen, a 25-year-old MDA Shambassador from Farmington, Utah, visits stores in her area that participate in the MDA Shamrocks campaign, she knows firsthand how much the fundraising program does for individuals and families in the MDA community. “It’s a really good experience to be able to go to these stores and talk to cashiers and managers and be a face of the program and explain that this money is helping kids that I know,” she says.
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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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Walking Strong
For Rene Runions, a 19-year-old sophomore at Saint Louis University (SLU), MDA has been a part of her life since she was diagnosed with Charcot- Marie-Tooth disease (CMT) in the sixth grade. She started attending MDA Summer Camp in her home state of Illinois and later was named the Illinois State Ambassador.
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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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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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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.
Read MoreMDA 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 programs are only available in the U.S.
