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Startup Support

Once I was diagnosed with myotonic muscular dystrophy (DM), I sought a support group to learn more about my disease and meet others with the same diagnosis. Shortly after I began attending, the facilitator left the group and I was asked to take over her responsibilities. Talk about trial by fire. 

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The Team Approach

Brendan is a curious, bright-eyed 7-year-old with a fun-loving attitude and a buoyant smile. He was diagnosed with Duchenne muscular dystrophy (DMD) when he was 23 months old. His mother, Colleen Labbadia, describes his diagnosis as long and heartbreaking but adds that there has been a bright spot. “Brendan is seen at the MDA Care Center at Nemours Children’s Hospital in Orlando, and we absolutely love it,” she says. “They have been our silver lining.”

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Creative Control

“I believe that if you are laughing, you are living.” This is 34-year-old Jared Aronson’s mantra. And he’s not particular about what deserves a good guffaw. He’ll laugh out loud over a clever play on words, a ridiculous Twitter post or even a temporary misfire as he masterminds yet another invention. Inventing is what fuels Aronson’s mojo. “I love problem-solving,” he says.

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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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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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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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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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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 programs are only available in the U.S.

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