Virtual Events Mark MDA’s Muscular Dystrophy Awareness Month

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by Patricia Inácio, PhD |

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MDA Awareness Month

This year, the Muscular Dystrophy Association (MDA) will celebrate MDA National Muscular Dystrophy Awareness Month, held every September, with a series of online events.

The events will be held virtually for the first time to ensure maximum participation, while promoting social distancing and other safety measures for people with neuromuscular disease.

The initiative includes the MDA Muscle Walk and the Harley-Davidson MDA Ride for Life, scheduled for the Labor Day weekend, and is part of an effort to heighten awareness for muscular dystrophy, amyotrophic lateral sclerosis (ALS), and associated disorders, and to raise money needed to support continued research and better patient care.

“Labor Day Weekend has always been an incredibly important fundraising time for MDA and now, during the pandemic it is more critical than ever for our vulnerable community,” Lynn O’Connor Vos, president and CEO of MDA, said in a press release.

COVID-19 won’t stop us as we embrace virtual events for our MDA Muscle Walks, our long-standing Harley-Davidson Ride for Strength, our IAFF [International Association of Fire Fighters] Fill the Boot program, and our fall galas. We will continue to raise awareness for muscular dystrophy, ALS and related neuromuscular diseases so we can fund the research and care to find cures,” she added.

MDA Virtual Muscle Walk

On Sept. 5, MDA Virtual Muscle Walk, supported by Biogen and the Numotion Foundation, will include a series of events intended to make people move, such as an accessible fitness class featuring YouTuber Jackson Everything and a spin class by Flywheel instructor Colin Batty.

The event is on its way to raising $1 million, and will have over 3,000 participants. Information on how to register or join a team, or to donate is available here.

Whether you can move on your own or need the assistance of a partner, team up with MDA to make your move. Go out and run or walk a 5K, take a virtual yoga or workout class, do a dance on social media, or make any move of your choice,” the MDA stated on the event’s webpage.

Among planned events are virtual pep rallies, virtual work out classes, and a post walk party.

Alumni MDA National Ambassador Justin Moy will host an Instagram Live Celebration at 3 p.m. ET. The event will feature top fundraising families, as well as IAFF partners and Jennifer Sierra, an Instagram influencer and spinal muscular atrophy patient. Participation is open via the Facebook and Instagram pages of MDA Team Momentum.

Virtual Ride for Life

This marks the 33rd year of MDA Ride for Life, the largest Harley-Davidson fundraising ride worldwide held over Labor Day weekend in the U.S. Open to riders of all locations, those who raise $125 or more will receive a limited-edition Ride for Life 33 T-shirt, designed by Danial James exclusively for Ride for Life and the MDA.

On the event’s Facebook page, people can join the ride and watch the Celebration Ceremony live on Sept. 5 (1 p.m. ET). One rider will be awarded a 2020 Harley-Davidson LiveWire motorcycle, provided by Harley-Davidson Motor Company.

Sponsors of the virtual ride include East Penn Manufacturing, the Eastern H-D Dealers Association, Western PA H-D Dealers Association, and Harley-Davidson.

The MDA Muscular Dystrophy Awareness Month virtual initiatives also include the fall gala series and MDA Let’s Play.

The first of the fall galas, a series of virtual events featuring MDA ambassadors, and including mission moments and special auction items, is scheduled for Sept. 3 and called Toast to Life. Subsequent galas will be Black-N-Blue on Sept. 11, Night of Hope on Oct. 23, and Muscle Team on Nov. 10.

In turn, MDA Let’s Play, open to patients, supporters, family members, and friends who love video games, occurs every Saturday at 7 p.m. ET. The initiative has counted with prominent gamers such as YouTubers JeromeASF and LordMinon777. The MDA Let’s Play Discord is available here to join game nights. A special edition will take place on Sept. 5.

Activities throughout September include the Fill the Boot campaign, a fundraising IAFF effort also going virtual this year. To participate, people create a Fill the Boot fundraising page and then spread the word so that everyone can donate. Almost $400,000 have been raised to date to help fight muscular dystrophy in the U.S.

The event has been taking place for 66 years as Fill the Boot drives by the IAFF, the MDA’s largest national partner.

Other ways to participate and support Awareness Month can be found here.