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MDA Programs

Running to a Cure

Indianapolis Colts running back Nyheim Hines, whose mother, grandmother, and uncle live or have lived with limb-girdle muscular dystrophy (LGMD), has been a longtime supporter of MDA. Now, as MDA’s official 2021 spokesperson, he will make an even greater impact in the quest to find a cure."Having family members with muscular dystrophy has always motivated me to spend my free time trying to raise awareness, so we can find cures and provide the best care for families across the country living with these diseases," Nyheim says.

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MDA Q&A: Top of Mind

You don’t have to navigate your neuromuscular disease journey alone. The MDA Resource Center is available to provide one-on-one support. Here, Resource Center specialists answer Quest readers’ top questions. Q: I have oculopharyngeal muscular dystrophy (OPMD). Is COVID-19 vaccination safe for people with neuromuscular disease? Are there any side effects?

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Find the Right Resources

Amy Curran, 38, lives in Philadelphia with GNE myopathy, as do her three older siblings. Considering the high cost of accessible vehicles, this close-knit family decided to pool their resources and buy one wheelchair-accessible van. They use an online calendar to keep track of who’s using the van when. The van fits two power wheelchairs, so they often take turns going on outings in pairs.

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Support for Your Journey

Why do people contact the MDA Resource Center? There are a lot of reasons, according to Brooke Smith, associate director of the Resource Center.It could be that they or a family member was recently diagnosed with a neuromuscular disease, and they need information about the disease or want to find an MDA Care Center.

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Happy (Virtual) Camper

For Lily Ruta, 12, the 2020 virtual MDA Summer Camp offered one of her favorite activities — arts and crafts — plus an added bonus: connecting with kids like her all over the country.“After the first day of camp, Lily was so excited to talk to me about another child she met with CMT [Charcot-Marie-Tooth disease] type 1A who has a mom with CMT, too — same as us — and who wears braces, too. She also found a friend who loves the same book series,” says Lily’s mom, Melissa, who also lives with CMT.

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New Research Channels for Myotonia Congenita

Myotonia congenita is an inherited myopathy that prevents affected individuals from relaxing certain muscles after contracting them. The disorder causes muscle stiffness but not atrophy or shrinkage. On the contrary, it often leads to larger, stronger muscles.There are two types of myotonia congenita: Becker disease and Thomsen disease. The Becker type is inherited as an autosomal recessive trait, meaning it is produced when both parents contribute a defective gene. Becker is the more common and more severe form of the disease. It generally shows up between ages 4 and 12, though in rare cases it may occur as late as age 18. Symptoms tend to worsen over time.

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2020 Reader Photo Contest Winners

Congratulations to Julie MacIntyre of Millville, NJ, our Lasting Impression Photo Contest winner.Julie, 32, was three months post-heart transplant when she and her boyfriend, Barry, went parasailing during a weekend trip to Ocean City, NJ, in 2017.“It was the first time I realized that I can do things now that I wasn’t able to for a really long time,” says Julie, who lives with limb-girdle muscular dystrophy (LGMD). “It was one of the best experiences I’ve had, even to this day.”

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The Way of the Future

As the novel coronavirus pandemic has called for vigilance in health safety measures such as social distancing — especially for people with neuromuscular disease who are at higher risk for severe illness related to COVID-19 — many of us have had to rethink how we do what we need to do. We’ve adjusted how we see our families and friends, how we get food and medicine, and how we continue care with therapists and physicians who, themselves, may work in high-risk locations.

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Reimagined and Moving Forward

On Oct. 24, actor and comedian Kevin Hart, dozens of his celebrity friends, and the MDA community joined together to raise funds for research, care (including Summer Camp and educational programming), and advocacy during The MDA Kevin Hart Kids Telethon.“This was an incredible experience — bringing the work of the Muscular Dystrophy Association forward,” said Kevin, who hosted the two-and-a-half-hour live event. “It’s been an honor to collaborate with MDA and educate the public about supporting people with disabilities. We are all in this together.”

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Change for the Better

Stephanie Erbacher is a passionate advocate on behalf of her 12-year-old daughter, Rylie, who has spinal muscular atrophy (SMA). Her path to advocacy started when Rylie couldn’t swing at a local playground in Cedar Rapids, Iowa.“I pushed the parks department to put in an adaptive swing with back support and a solid harness in front,” Stephanie says. When park officials responded that an accessible playground might be built in more than a year, Stephanie pressed on, emailing the city manager and eventually talking to the superintendent of parks. “I let them know I had researched costs of the swing and was very motivated to work with the city to see how we could find a solution that would allow disabled children to have even just a single option to be included at the playground.”

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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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