Raising Hope for Muscular Dystrophy This Awareness Month

Advocacy efforts 'providing ever more hope' for patients and families

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by Mary Chapman |

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Note: This story was updated Aug. 31, 2022, to clarify that MDA Advocate Madison Lawson will throw out the honorary pitch at the Cardinals game alongside Donald S. Wood.

Supporters across the country are poised to mark National Muscular Dystrophy Awareness Month, observed each September in the U.S.

The upcoming events this year seek to raise funds — and hope — while increasing awareness of muscular dystrophy (MD) and associated neuromuscular diseases. These disorders are thought to affect more than 300,000 U.S. families.

There will be awareness days spanning the month in 2022 for three types of MD: Duchenne, limb-girdle, and myotonic dystrophy. Sept. 7 is World Duchenne Awareness Day, International Myotonic Dystrophy Awareness Day is slated for Sept. 15, and Limb-Girdle Muscular Dystrophy Awareness Day will be held Sept. 30.

The yearly observance is led by the Muscular Dystrophy Association (MDA), which is offering a myriad of fundraising activities and events, according to a press release outlining some of the highlights of the monthlong campaign.

“Our commitment to neuromuscular disease research, clinical care, and advocacy has never been more vital to the wellbeing of individuals living with [neuromuscular diseases], their caregivers, and the clinicians who care for them than right now,” Sharon Hesterlee, PhD, MDA’s chief research officer, said in an emailed statement to Muscular Dystrophy News.

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“Funding for our mission enables teams working toward breakthrough therapies to continue this work, which may have a life-changing impact on people living with neuromuscular disease,” Hesterlee said, adding, “For example, our research and advocacy work, including newborn screening, is saving babies’ lives.”

To that end, activities are slated throughout the month, kicking off in St. Louis with the MDA Tribute Tour, which takes place Sept. 1-4. This event spotlights the community of volunteers that supports MDA families, celebrates partnerships, and honors the medical teams at the organization’s pediatric and amyotrophic lateral sclerosis (ALS) Care Centers.

“Raising awareness year-round, and specifically with a national effort through Muscular Dystrophy Awareness Month, allows us to convene the community and educate the general public to engage in support for these efforts,” Hesterlee said.

Throughout Labor Day weekend, the International Association of Fire Fighters (IAFF), will continue its 68-year Fill the Boot effort to raise awareness and funds for MDA. The IAFF will be joined in and around the St. Louis area by first responders from St. Louis Local 73 and Eastern Missouri Local 2665. Local 73 members also will be on hand to receive donations prior to the St. Louis Cardinals baseball games slated for Sept. 2-5. So far this year, as of Aug. 30, $57,924 has been raised toward a $2 million goal.

On Sept. 3, MDA advocate Madison Lawson, who lives with spinal muscular atrophy, will toss the honorary pitch at that Cardinals game, with Donald S. Wood, PhD, MDA’s president and CEO, on the mound by her side.

Then on Sept. 4, NBC’s KSDK 5 On Your Side “Show of Strength” will present a live two-hour special from Grant’s Farm in St. Louis, Missouri. All monies raised will support the MDA’s Summer Camp, Care Centers, research, advocacy efforts, and support services.

The show marks the 35th anniversary of Mike Bush’s support of MDA as a host of the venerable fundraiser. Donations may be made on the channel’s website.

Bush will be honored during the televised program as part of the MDA Tribute Awards.

“I’ve been involved with MDA for more than 30 years and these kids and adults are my heroes,” Bush said in another MDA press release. “They face challenges every day with kindness and grace, and it’s the great honor of my life to do anything I can to help.”

The awards also will honor Alan Pestronk, MD, co-director of the MDA & ALS Care Center at the Washington University School of Medicine. Pestronk has served MDA families for more than 50 years and has trained more than 100 neuromuscular research fellows.

“This award reflects my long-time, very gratifying relationship with MDA,” Pestronk said. “MDA supported my own neuromuscular fellowship training and my first research grant at John Hopkins in the 1970s. During the past 30+ years, MDA has supported our multidisciplinary MDA adult and pediatric clinics at Washington University in St. Louis.”

“Our neuromuscular group has collaborated with MDA to develop understanding, treatments, and improvements in the quality of life of patients with myasthenia gravis, hereditary myopathies, amyotrophic lateral sclerosis, spinal muscular atrophy, and other neuromuscular disorders,” he added.

Also celebrated at the awards will be members of the Muscle Walk team “The Flying Pigs,”  This team was established by two neuromuscular disease families and neighbors that came together to raise funds and awareness. The families include Jennifer and Chris Hawn, along with Emily Bliss and Doug Holler and their three children.

“MDA Tribute Tours have celebrated Strength in Unity, Strength in Community in Las Vegas, Nashville, Houston, and now St. Louis,” said Kristine Welker, MDA’s chief of staff. “We can’t wait to come together in a show of strength, gratitude, and admiration for these extraordinary individuals who have been tireless in their efforts to support our St. Louis families and communities we serve.”

On Sept. 19, the organization will announce grant recipients of more than $17 million in research funding for areas including genome sequencing and next-generation gene-editing technologies.

Then, on Sept. 28-29, MDA advocates from across the country will meet virtually with legislators to push issues important to MDA communities at the organization’s long-standing MDA Summit and Hill Day.

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Events on tap throughout muscular dystrophy awareness month

In a fundraising campaign called “30 Days of Strength,” National Collegiate Athletic Association athletes will raise MD awareness throughout the month. There are also MDA walks, golf, and gala events throughout the month, including:

  • Savannah Toast to Life, in Georgia, on Sept. 8
  • Meridian Clinical Research Omaha MDA Golf Classic, in Nebraska, on Sept. 14
  • Muscle Walk of Minnesota, in the Twin Cities, on Sept. 17
  • Nashville Muscle Team Gala, in Tennessee, on Sept. 20
  • Boston Muscle Team Golf Outing, in Plymouth, Massachusetts, on Sept. 21
  • First Annual Hayes Festival and Motorcycle Rally, in Mequon, Wisconsin on Sept. 23
  • Muscle Walk of Massachusetts, in Boston, on Sept. 25
  • Colony Hardware Golf Outing, in Rochester, Michigan, on Sept. 26
  • Tanks Direct FFMD Muscle Classic Golf Tournament, in Queenstown, Maryland, on Sept. 26

MDA also joins a global alliance of more than 50 organizations to mark the second annual International Myotonic Dystrophy Awareness Day on Sept. 15. This is the most common form of adult muscular dystrophy but it’s often misdiagnosed and insufficiently supported, according to the MDA.

In addition to its goal of heightening awareness among the general public, the alliance this year will focus on increased education among clinical care teams, in addition to patient readiness for clinical trials.

“Myotonic dystrophy is a rare and widely variable disease, yet perhaps not as rare as believed, just not identified,” Emma-Jayne Ashley, founding trustee of Cure DM UK, said in another press release from the MDA. “Individuals and families living with [myotonic dystrophy] often unfairly bear the burden of educating their clinical care teams about the disease and the realities of living with it.”

On World Duchenne Day, Sept. 7, Charlie Harley, who lives with Duchenne muscular dystrophy and is a member of a gaming community called MDA Let’s Play, will host an MDA fundraiser. Supporters are invited to join the community for weekly game nights on Saturdays at 7 p.m. ET on Twitch.

Meanwhile, Sept. 30 is Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day, which this year is themed: “I Am LGMD.” Supporters can take advantage of the event flyer and sticker to observe the month, presented by the LGMD Awareness Foundation.

“There is a reason for hope. Even with bad days that we all have where we feel like LGMD is winning in our fight, there is so much hope that is helping us win that fight,” the organization states on an event webpage.

By working together, Wood said, the MDA and its supporters have “made a history of making the impossible possible.” There are now more treatments for MD and related disorders than ever before, he noted.

“Hope for a longer, more independent life is now becoming a reality for individuals living with muscular dystrophy and related diseases,” Wood said.

“Muscular Dystrophy Awareness Month is an important time to recognize our long-standing legacy with valued supporters, clinicians, researchers, and many others providing this pipeline of progress that is the hallmark of today’s neuromuscular disease frontier,” he added.