MDA Programs

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.”

Game On!

On March 21, MDA launched Game Night, a weekly Saturday night event designed to gather online gamers and families for regular connection (and a little healthy competition).It couldn’t have been better timed.MDA began developing its online gaming platform, MDA Let’s Play, in 2019. The idea was simple: connect the online gaming community and the MDA community — which already overlap — to grow a new network of support. And now, as families have found themselves practicing social distancing from friends, neighbors, and family, there’s no better time to go online for a bit of fun together in support of MDA’s cause — and maybe to build the most amazing Minecraft village in history while they’re at it.

A Good Beginning: Newborn Screening

Early diagnosis and treatment for neuromuscular diseases that can be treated is crucial, as the disorders are progressive and, in many cases, fatal. Spinal muscular atrophy (SMA), for example, is the leading genetic cause of death in infants. While only a few years ago there were no disease-modifying therapies for SMA, today there are multiple lifesaving treatment options on the market.

How Drugs Are Developed

Have you ever wondered what has to happen for the scientific community and pharmaceutical industry to develop a new drug and get it on the market, where physicians can prescribe it to treat a neuromuscular disease? Estimates vary, but it’s safe to say that, on average, out of 10,000 experimental compounds, one drug may make it to pharmacy shelves, and it will take at least 10 years and more than $1 billion to get it there.

Meet MDA’s National Ambassadors

There was a palpable buzz in the air on March 12 at the kickoff of the 2018 MDA Clinical Conference in Arlington, Va. The announcement of the new MDA National Ambassador was one of the most-anticipated elements of the day, and the crowd was excited to learn that this year, MDA has not one but two National Ambassadors: 6-year-old Faith Fortenberry of Waco, Texas, and 17-year-old Justin Moy of Concord, Mass.

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.

Pushing the Limit

After running three marathons with MDA Team Momentum since 2014, Will Farr was ready for a bigger challenge. Farr had previously pushed his 14-year-old son, Owen, who has Duchenne muscular dystrophy (DMD), in a racing chair for a 4-mile race as part of a charitable initiative of the men’s workout group F3 Nation. In a video made to promote the initiative, Owen was asked if he thought his dad would push him in a marathon. Of course, Owen’s answer was “Yes,” and Farr decided to prove Owen right. In October, at the 2017 Marine Corps Marathon in Washington, D.C., Farr pushed Owen for the entire 26.2-mile race.

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.

Productive Partnership

Since first partnering with MDA in 1985, Acosta, a full-service sales and marketing company focused on packaged consumer goods, has raised more than $82 million for MDA’s mission. Acosta’s staff support MDA through fundraising events, marketing promotions and even volunteering at MDA Summer Camps. Here are just some of the ways Acosta offices across the country have showed their support for MDA:

A Word from President & CEO Lynn O’Connor Vos

Since joining MDA as president and CEO in October, I’ve had the sincere pleasure of spending time with and learning from our families, leading clinical experts, renowned researchers, dedicated sponsors, and passionate MDA staff and volunteers. The progress we’re making together is unprecedented, and I know it is only the tip of the iceberg. Working together, I see incredible opportunities to push the limits of neuromuscular disease research and provide an even better health care experience for individuals and their families.

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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.

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