Over 420 ‘Fill the Boot’ events in US to raise funds for MDA
Labor Day weekend drive aims to aid research, care in ALS, other diseases
The Muscular Dystrophy Association (MDA) and the International Association of Fire Fighters (IAFF) are teaming up once again, launching more than 420 “Fill the Boot” events this year to raise funds for research and care for people with neuromuscular diseases, including amyotrophic lateral sclerosis (ALS).
The fundraising initiative will be held throughout Labor Day weekend in more than 40 U.S. states. More than 349,000 IAFF staff members, as well as their affiliates, will help raise funds. Firefighters will be in streets across the country with boots in hand asking those that pass by to support the MDA’s mission. Online donations also will be possible.
This is the 70th year of the MDA and IAFF partnership. In 1954, the IAFF selected MDA as its charity of choice and committed to raising awareness and funds to find a cure for people with ALS and other neuromuscular disorders.
“Since 1954, fire fighters have been dedicated to Filling the Boot for the Muscular Dystrophy Association. That commitment is as important today as it was 70 years ago,” Edward Kelly, general president of IAFF, said in an MDA press release.
“While we have made significant progress for those living with neuromuscular disease, IAFF members remain steadfast in our mission to support MDA families, one dollar at a time,” Kelly added. “We will continue answering the call and do our part to help MDA find new treatments and improve access to care for those it serves.”
Fill the Boot events help fund MDA Summer Camp for kids
Donald S. Wood, PhD, the MDA’s president and CEO, noted that “September marks the beginning of National Muscular Dystrophy Awareness Month,” which he called “a pivotal time for this cherished tradition.”
“We are profoundly grateful to our dedicated partners at IAFF and eagerly anticipate the kick-off of hundreds of Fill the Boot events in communities across the country this Labor Day weekend,” Wood said.
Monies raised by Fill the Boot help support the MDA Summer Camp, which the group calls “a life-changing week!” on its website.
The MDA Summer Camp is a safe space for children with neuromuscular disorders to interact and engage in activities, such as arts and crafts, as well as sports. The camps are held nationwide with no costs to families.
Since its launch, Fill the Boot has raised more than $700 million for the MDA. The goal this year is to raise $2 million to continue to support the organization’s mission to empower those with neuromuscular disease.
“The funds raised by Fill the Boot … have also fueled groundbreaking scientific and clinical breakthroughs,” Wood said.
This funding has led to even more FDA-approved treatments for various neuromuscular diseases just this year alone. The urgency of our mission has never been greater, and we must continue to push forward with even more determination.
The MDA has used the monies to support the development of several now-approved treatments for neuromuscular disorders. One such treatment is Elevidys, which last year became the first gene therapy approved for Duchenne muscular dystrophy in the U.S. To assist and guide patients regarding approved gene therapies, the MDA has launched the Gene Therapy Support Network.
Access to treatments and care, newborn screening, and other advocacy initiatives also are supported by IAFF-raised funds.
“Our MDA Care Center Network and MDA Gene Therapy Support Network staff are diligently guiding families through transformative gene therapy,” Wood said. “Moreover, this funding has led to even more FDA-approved treatments for various neuromuscular diseases just this year alone. The urgency of our mission has never been greater, and we must continue to push forward with even more determination.”
The campaign and its results will be shared on both the MDA and IAFF’s social media channels using the hashtag #FillTheBoot.
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