As part of an effort to heighten awareness of its work in research, treatment and care — as well as to raise funds — the Muscular Dystrophy Association (MDA) has proclaimed September MDA National Muscular Dystrophy Awareness Month.
The launch dovetails with World Duchenne Awareness Day, observed annually on Sept. 7. A progressive disorder that causes muscle weakness, Duchenne is the most common type of muscular dystrophy (MD) in children, affecting 1 in 5,000 newborn boys.
For nearly 70 years, the MDA has been the nation’s largest non-profit supporter of MD research. The venerable organization has invested some $1 billion in studies — funding 224 grants last year alone — resulting in six federally approved MD treatments, it said in a press release.
It recently launched its Gene Catalyst Initiative, a varied effort aimed at driving advances in genetic medicine through genetic diagnoses, public education, promotion of gene-targeted therapies, and a push to make its MDA Care Centers home to genetic medicine experts.
Now, the MDA’s MOVR (neuroMuscular ObserVational Research) Data Hub will offer a collection of real-world data the organization hopes scientists, medical professionals, and other stakeholders can use to improve health outcomes, as well as clinical trial design and patient participation.
“Neuromuscular diseases can take away an individual’s ability to move, eat and even breathe but nothing can take away their sheer will to succeed and pursue their dreams,” said Lynn O’Connor Vos, MDA’s president and CEO.
“Since the days of the MDA’s renowned annual Labor Day telethon, September has been one of our most important fundraising periods to help us continue our mission of transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular diseases. We have made tremendous progress in the last few years, but we need the public’s continued support if we are to accelerate the momentum to find cures.”
The MDA’s awareness drive includes #30DaysofStrength, a fundraising campaign aimed at supporting the organization’s 150-plus Care Centers, Summer Camp, Engage educational events, Muscle Walks, and other year-round efforts.
During September, campaign supporters may either donate or start their own online fundraiser, personalizing it with a declaration of intent to reach a 30-day goal — cooking a new meal nightly, for example — while helping the MDA advance innovations in science and care through sponsorship of that goal.
As part of #30DaysofStrength, the organization is seeking to spark social discussions by featuring narratives meant to underscore the willpower of those living with neuromuscular disease. Each day this month, the MDA will highlight someone whose mission it is to transform patients’ lives.
The “I Will” series was kicked off by longtime MDA advocate and Philadelphia Phillies first baseman Rhys Hoskins, who vows to turn the Phillies’ ballpark into a campground for youths with muscular dystrophy.
Individuals who live with MD, including Devin Argall, also are sharing their stories. Physicians had expected Argall to be in a wheelchair by age 10. However, after receiving a new Duchenne therapy developed with the organization’s support, he is 17 and able to walk.
The hardest thing Argall has ever done, he explains in his story, is show his friends that he’s more like them than they think.
Yet, that is exactly what he said he’ll keep doing: “I will be able to walk across the stage at graduation and receive my diploma,” he vows.