Advocates launch new events for Muscular Dystrophy Awareness Month
Campaigns will spotlight 'strength' of those living with disease's many types
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September is Muscular Dystrophy Awareness Month, and advocates are launching campaigns to educate people about the different types of rare genetic muscle disorders that comprise muscular dystrophy (MD) — and to fundraise to fuel research.
Still, the focus is on spotlighting those living with MD, Kelly Berger, community engagement manager at the advocacy group Cure CMD, told Muscular Dystrophy News.
“It’s more than just a month of awareness — it’s a time to honor and celebrate the ongoing resilience of those living with muscular dystrophy,” said Berger, who lives with a form of congenital muscular dystrophy. “It helps create meaningful change and hope for a brighter future where every person affected can live with greater support, opportunity, and understanding.”
According to Berger, “honoring Muscular Dystrophy Awareness Month every September is essential to continue to promote, educate, and draw attention to this important cause.”
Muscular dystrophy, in all of its types, is generally marked by muscle weakness and wasting. Throughout September, a number of notable events are on tap to raise awareness of specific MD types. On Sept. 7, advocates around the world will shine a light on Duchenne muscular dystrophy (DMD) and the related disorder Becker muscular dystrophy for World Duchenne Awareness Day.
According to advocacy group Parent Project Muscular Dystrophy (PPMD), the focus of the awareness day this month is on improving access to the best care and support for patients.
“This year’s theme, ‘Access Changes Lives,’ recognizes that true progress is measured not only by scientific breakthroughs, but by ensuring that every person living with Duchenne and Becker has the opportunity to access the care, support, and opportunities they need to live a full and meaningful life,” PPMD said in a letter to the community.
PPMD has created a wealth of online resources for World Duchenne Awareness Day, including a family activation guide, as well as various tools to help spread the word on social media. A range of fundraisers will be hosted by the nonprofit, both in-person and online.
‘Bad Shirt Friday’ kicks off awareness month for PPMD
The group’s activities and events start this Friday, Sept. 4 — with a special way for family members and friends to get involved.
“Bad Shirt Friday is a chance to show that families are not only at the center of care, but also at the center of this effort to raise awareness for Duchenne. Whether you’re a parent, sibling, friend, or ally—your voice (and your shirt!) can help amplify the message,” PPMD states, encouraging participants to wear their “loudest, most outrageous shirts” and “share a selfie on social media using the hashtag #BadShirtFriday.” Donations are also welcome, the letter states.
Another DMD-focused advocacy group, the Jett Foundation, is hosting an in-person luncheon to celebrate World Duchenne Awareness Day on Saturday, Sept. 12, in Norwood, Massachusetts. The nonprofit is also running virtual advocacy events throughout the month. The nonprofit Cure Duchenne is hosting events across the U.S. throughout September.
Later in the month, on Sept. 30, is Limb-Girdle Muscular Dystrophy Awareness Day, which spotlights a type of MD characterized by muscle wasting at the shoulders and the hips. LGMD, fully limb-girdle muscular dystrophy, has multiple subtypes dependent on the gene affected.
For September, the LGMD Awareness Foundation has created an online toolkit with tips for everything from social media posts to requesting proclamations from governors. This year, for the first time, the group is also hosting a virtual 5K walk/run/roll to fundraise.
Gift to MDA will match donations all month
Throughout September, the Muscular Dystrophy Association (MDA) is running a campaign called #MDAstrong, in which people in the neuromuscular community are encouraged to share what strength means to them.
“Strength looks different for everyone in the neuromuscular disease community, and that’s exactly what makes this campaign so meaningful,” Sandra Sullivan, vice president of campaign strategy at the MDA, told Muscular Dystrophy News.
During the MDA’s September Strong Challenge, a $500,000 challenge gift from an anonymous donor’s estate will double every donation to support the MDA’s mission.
“With #MDAstrong, we’re creating space for people to define strength on their own terms, whether that means adapting to a new challenge, advocating for change, supporting a loved one, pursuing a dream, or simply showing up each day,” Sullivan said. “We want people to see their own experiences reflected and to know that their stories, their voices, and their definitions of strength matter. This September, we’re inviting the entire community to help us redefine what it means to be strong, together.”
Strength looks different for everyone in the neuromuscular disease community, and that’s exactly what makes this campaign so meaningful.
In addition to DMD and LGMD, other muscular dystrophies will have their own dedicated day in September. Myotonic Dystrophy Awareness Day will be marked on Sept. 15 and Oculopharyngeal Muscular Dystrophy Awareness Day will be held Sept. 23.
“Every person defines strength differently because every journey is different,” Sharon Hesterlee, PhD, the MDA’s president and CEO, said in a press release.
“For someone living with a neuromuscular disease, strength may be learning a new way to do something independently. For a caregiver, it may be showing up every day. For a researcher or a clinician, it may be pursuing the next scientific breakthrough to improve lives. For volunteers, it may be giving their time to support an event to strengthen community,” Hesterlee said.
She added that the new campaign “celebrates every one of these experiences because strength isn’t one-size-fits-all.” Instead, “it grows through community, compassion, and support to bring research to reality for the families we serve,” Hesterlee said.
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