Focusing on ‘strength’ this Muscular Dystrophy Awareness Month
MDA CEO: 'Awareness is not just about a month on the calendar'
Across the U.S., the neuromuscular disease community is preparing to mark Muscular Dystrophy Awareness Month this September, with a series of events and activities aimed at spotlighting muscular dystrophy (MD) and other related conditions.
These efforts, organizers say, also seek to raise vital funds to support all individuals in the country who are affected by MD and other neuromuscular diseases.
“For too many families, life with a neuromuscular disease means facing challenges that aren’t always visible to others, from the physical toll to the emotional weight of navigating daily life,” Sharon Hesterlee, PhD, interim president and CEO of the Muscular Dystrophy Association (MDA) said in an exclusive statement to Muscular Dystrophy News.
“Awareness is not just about a month on the calendar; it’s about fostering understanding, empathy, and support every day of the year,” Hesterlee said.
The MDA established the annual monthlong observance in 2019 and continues to lead it. The campaign is directed not only toward the general public but also toward lawmakers, researchers, healthcare professionals, industry leaders, and policymakers. Its goal is to foster, and deepen, educational, advocacy, and awareness efforts around muscular dystrophy and related neuromuscular diseases.
The focus of this year’s campaign is on what it means to be “strong,” according to an MDA press release.
‘Community Spotlight’ series sharing stories by people affected by Duchenne
Throughout September, Muscular Dystrophy News is running a series called “Community Spotlight,” focused on Duchenne muscular dystrophy. Known as DMD, Duchenne is the most common form of muscular dystrophy. The condition, which usually affects boys and men, leads to progressive muscle weakness and wasting.
Every few days, the initiative will feature a story by someone with Duchenne about the real-life experience of living with the disease. Topics will include daily life, independent living, family and MD, and advocacy. The 15 narratives will appear on Facebook, Instagram, X, and Pinterest.
“The stories that we’re featuring in this spotlight campaign are honest, sincere, and cover a wide range of topics related to living with Duchenne,” said Kevin Schaefer, associate director of community content at Bionews. “MD News columnist Patrick Moeschen assembled a great team of contributors, and we can’t wait to share these stories with the community throughout September.”
This year’s Muscular Dystrophy Awareness Month observance, which launches this Labor Day weekend, marks the MDA’s 75th anniversary. It features the #MDAstrong campaign, which will highlight stories of strength within the neuromuscular disease community and from the public through social media, digital storytelling, and fundraising events nationwide.
“Being strong doesn’t look the same for everyone, and that’s what makes it powerful,” Hesterlee noted in the MDA press release. “For some, it’s found in family or in caregiving. For others, it’s expressed through creativity, humor, advocacy, or scientific discovery. Our ‘MDA Strong’ campaign honors all the ways members of our community show resilience, whether loudly or quietly, publicly or personally. Every version of ‘strong’ is valid, valuable, and worthy of recognition.”
Special days aim to bring awareness to different types of MD
During the #MDAstrong campaign, several disease-specific awareness days will be recognized, including:
- Sept. 7: World Duchenne Awareness Day
- Sept. 15: Myotonic Dystrophy Awareness Day
- Sept. 23: Oculopharyngeal Muscular Dystrophy Awareness Day
- Sept. 25: International Ataxia Awareness Day
- Sept. 30: Limb-Girdle Muscular Dystrophy Day
The organization will also recognize Charcot-Marie-Tooth (CMT) disease Awareness Month, which occurs in September. CMT is a group of conditions of the peripheral nervous system, which are those that supply movement and sensation to the arms and legs.
MDA ambassadors and notable community creators, including Brooke Eby, who has amyotrophic lateral sclerosis, will help kick off the #MDAstrong campaign on social media. Follow @MDAorg and #MDAstrong.
“Staying strong with ALS isn’t always easy,” said Eby. “But I’ve found that leaning on humor, community, and support from organizations like Muscular Dystrophy Association make all the difference. I’m excited to be part of sharing my story to connect more families with support and resources and help lift others up and raise awareness and funds for MDA’s mission to support multidisciplinary care centers nationwide, lifesaving research, and advocacy.”
The social media campaign also features Los Angeles Chargers running back and MDA national spokesperson Nyheim Miller-Hines, who will honor his mother’s journey with limb-girdle muscular dystrophy by adding her last name to his NFL jersey.
“During this pre-season, when I took the field as Nyheim Miller-Hines, I was carrying more than a football, I was carrying my family’s story and the fight of the entire neuromuscular community,” he said.
In addition, the campaign will feature weekly social media themes pertaining to strength and featuring caregivers, researchers, clinicians, and MDA ambassadors. The organization has created a digital storytelling hub where anyone can submit stories, photos, and videos that address what strong means to them.
As part of the MDA Strong campaign, the MDA is also mobilizing advocates to protect and strengthen federal funding for scientific discovery, including research backed by the National Institutes of Health (NIH). Community members and supporters are asked to contact their congressional representatives and voice their opposition to any cuts in NIH funding.
Firefighters across US to once again stage ‘Fill the Boot’ fundraisers
Over Labor Day weekend, the MDA is celebrating 71 years of partnership with the International Association of Fire Fighters (IAFF). Some 370 “Fill the Boot” events will take place across the country. IAFF members will take to the streets with their iconic firefighter boots in hand, collecting donations to advance the MDA’s mission of care and research.
Supporters can also contribute through online donations to help the campaign reach its $1 million fundraising goal.
“Firefighters are proud to stand on the frontlines with Muscular Dystrophy Association in our continued commitment to partnership until cures are found,” said Edward A. Kelly, IAFF general president. “Our members are out in force, boots in hand, because we believe in MDA’s mission and the progress that we’re making together, which has led to over 25 approved … treatments for genetic diseases once thought impossible to discover.”
When people acknowledge and support the neuromuscular community, it not only drives research and access to care, but it also validates the lived experiences of people who too often feel unseen. … That recognition matters, it makes the journey less isolating and helps build a stronger future for us all.
On Aug. 31, KSDK NBC’s 5 On Your Side will once again present the annual MDA “Show of Strength” telethon in St. Louis. This year marks anchor Mike Bush’s 39th consecutive year hosting the fundraising broadcast, which supports the MDA. The show will feature inspiring stories from families living with neuromuscular conditions.
Hesterlee said each show of support matters to people living with conditions like MD.
“When people acknowledge and support the neuromuscular community, it not only drives research and access to care, but it also validates the lived experiences of people who too often feel unseen,” Hesterlee said. “That recognition matters, it makes the journey less isolating and helps build a stronger future for us all.”
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