Marking ’30 Days of Strength’ for MD Awareness Month this year
MDA to celebrate progress, sense of community with events this September
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The muscular dystrophy (MD) community is poised to mark National Muscular Dystrophy Awareness Month with events throughout September to call attention to MD and related neuromuscular disorders — and to raise critical funds for the more than 300,000 U.S. families thought to be affected.
The annual observance was established in 2019 by the Muscular Dystrophy Association (MDA), the advocacy organization that leads it. The campaign this year, as in every year, is aimed at the general public, as well as lawmakers, scientists, public authorities, health professionals, and industry representatives, with the goal of increasing education and awareness.
“As we mark Muscular Dystrophy Awareness Month this September, we celebrate the significant progress Muscular Dystrophy Association has made, and the strong sense of community we have built together,” Donald S. Wood, PhD, MDA president and CEO, said in a press release. “Thanks to the support of our researchers, medical teams, partners, sponsors, volunteers, board of directors, and staff, we now stand in an era of effective treatments. Our commitment to advancing research, providing support, and raising awareness is resolute.”
For 2024, the nonprofit is reprising its “30 Days of Strength” campaign, which covers the numerous fundraising programs and events taking place during the month. Among those helping to shine a light on the MDA’s efforts on social media platforms is MDA national spokesperson and professional football player Nyheim Hines, a Cleveland Browns running back. Supporters may follow along with @MDAorg using the hashtag #30DaysOfStrength.
As part of the campaign, those who donate at least $35 — funding that will go to support MDA research, advocacy, and the more than 150 MDA Care Centers nationwide — will receive an MDA long-sleeved T-shirt.
Reprised campaign all about empowering patients, families
Through “30 Ways for 30 Days of Strength,” the MDA offers supporters an option each day to aid those living with neuromuscular disorders. For example, people can join an MDA Muscle Walk, attend a virtual learning session, or even just post a favorite quote about resilience on social media.
According to Morgan Roth, the MDA’s chief marketing officer, “highlighting our mission and fundraising initiatives during Muscular Dystrophy Awareness Month allows the Muscular Dystrophy Association to spotlight programs that bring measurable value to our community and beyond.
“By sharing dynamic opportunities including ‘30 Ways in 30 Days’ to activate their networks, we empower our supporters to engage and unleash their creativity to fuel our momentum,” Roth said.
Throughout Labor Day weekend, the MDA — now in its 70th year of partnership with the International Association of Firefighters (IAFF) — will present some 420 Fill the Boot events in more than 40 states. Funds raised by the more than 349,000 IAFF members and their affiliates, who will hit the streets for donations with firefighter uniform boots in hand, will support the MDA’s mission for research and care. Online donations to help the campaign reach its $2 million goal also are welcome.
By sharing dynamic opportunities including ‘30 Ways in 30 Days’ to activate their networks, we empower our supporters to engage and unleash their creativity to fuel our momentum.
On Sept. 1, the NBC-KSDK “Show of Strength” will again be presented in St. Louis by the “5 On Your Side” annual telethon. This year marks anchor Mike Bush’s 38th year hosting the telethon, which raises funds to benefit the MDA.
Throughout the month, the organization also will offer MDA Let’s Play, an online gaming community for playing video games and connecting with others. The platform also will present community-submitted photos and stories, including those from MDA Summer Camp. On Sept. 3, when MDA Let’s Play begins, a “Painting with Pyra” art event will feature submissions and digital drawing lessons.
Following that, on Sept. 8-10, more than 100 advocates from about 25 states will gather in Washington, D.C., for MDA on the Hill, an annual opportunity to lobby lawmakers on key issues affecting the neuromuscular disease community. The MDA also is using the month to highlight its Access the Vote program, which continues to provide tools and resources to help enable those with disabilities to vote in elections.
Virtual release of ‘Good Bad Things’ film slated for Sept. 20
What’s more, the virtual release of “Good Bad Things,” a film presented from the perspective of an individual with a disability, will take place on Sept. 20 with a post-screening question-and-answer session hosted by a number of the film’s producers, director, and cast members. Tickets are $19.99 and 25% of each one sold goes toward the MDA’s mission. The film will be available to ticket holders through Sept. 22.
“Good Bad Things is more than just a film; it represents the authentic inclusion of individuals living with disabilities in film that is long overdue,” Mindy Henderson, the MDA’s vice president for disability outreach and empowerment, told Muscular Dystrophy News in an email.
“It is a powerful testament to the beauty in our stories, and the resilience and strength of the disability community,” Henderson said. “We are honored to support this virtual screening and grateful for the generous contribution of 25% of ticket proceeds to MDA’s mission. This partnership not only amplifies voices that need to be heard but also directly impacts the lives of the people we serve, helping us continue our critical work in research, care, and advocacy.”
The film tells the story of an MD patient who tries online dating.
Steve Way, the film’s executive producer, said in a separate email to Muscular Dystrophy News that the team is “so excited for our virtual release so this beautiful, honest, and powerful film can be seen by the entire world.”
“Good Bad Things is a story told through the perspective of someone with a disability, but [its] themes are universal,” Way said.
Events nationwide are on tap to mark MD Awareness Month
A host of other MDA fundraising and community events are lined up throughout the month of September.
- On Sept. 7, the Muscle Walk of Minnesota will take place in Wolfe Park.
- On Sept. 14, a Breathwork & Mindfulness Class will be held in Westland, Michigan, while the Muscle Walk of Massachusetts will take place in Cambridge.
- On Sept. 17, the Nashville Muscle Team in Tennessee will host a Marathon Music Works.
- On Sept. 18, two virtual MDA Community Group sessions will be held for those newly diagnosed; one is for pediatric patients and one for adults.
- On Sept. 19, an MDA Community Group will be held for people newly diagnosed with ALS.
- On Sept. 20, the MDA’s Clay for a Cure will take place in Savannah, Georgia.
- On Sept. 20-21, the Sam Osborn Memorial Golf Tournament will be held in Omaha, Nebraska.
- On Sept. 21, a Family Bowling Bonanza will be held in Houston.
- On Sept. 24, the Boston Muscle Team Golf Outing will take place in Plymouth, Massachusetts.
- On Sept. 28, there will be a Chicago Family Trivia Event in Berwyn, Illinois.
Nearly 50 events in all are listed on the MDA’s calendar of events for MD Awareness Month.
During September, the nonprofit also will recognize other awareness efforts related to neuromuscular disorders. One such event is World Duchenne Awareness Day, observed annually on Sept. 7 to educate people about Duchenne muscular dystrophy (DMD), the most common form of MD. This year, the World Duchenne Organization will present a documentary that portrays the lives of those with DMD around the world. The disease, which mostly affects boys, is characterized by muscle wasting and weakness.
For International Myotonic Dystrophy Awareness Day, observed on Sept. 15, the Myotonic Dystrophy Foundation is asking supporters to help bring attention to myotonic dystrophy by getting local landmarks illuminated in green, the color that represents the disorder. Myotonic dystrophy is the most common type of late-developing MD.
Sept. 23 is OPMD Awareness Day, established to increase awareness of oculopharyngeal muscular dystrophy, a type of MD characterized by progressively weakening muscles that control the throat and eyes. The OPMD Association is offering ways to participate in awareness events, including hosting a Facebook fundraiser and sharing OPMD stories on social media.
There also are ways to support International Ataxia Awareness Day on Sept. 25, and Limb-Girdle Muscular Dystrophy Awareness Day on Sept. 30. Limb-girdle MD is a group of different disorders characterized by muscle wasting at the shoulders and the hips. Additionally, the MDA will recognize CMT (Charcot-Marie-Tooth) Awareness Month and Newborn Screening Awareness Month, both also observed in September.
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