MDA Programs
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.
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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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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:
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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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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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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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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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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.
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