Giving Muscle Disease the Boot

Through their partnership with MDA, our nation’s heroic fire fighters save lives even off the clock

Article Highlights:
  • In 2014, MDA and the IAFF are celebrating a 60-year partnership that has only grown stronger with age, a partnership that has produced a prolific fundraising endeavor called Fill the Boot.
  • Today, IAFF is MDA's single-largest fundraising partner and most ardent crusader in the quest to find treatments and a cure for muscle disease.
by Donna Shryer on April 1, 2014 - 9:47am

Quest Spring 2014

The year was 1954. Dwight D. Eisenhower called the White House home, a gallon of gas averaged 22 cents, and the TV show “Father Knows Best” kept Americans captivated with Hollywood’s version of the perfect family. But, as explained in a 1954 article published in The Press-Gazette (Hillsboro, Ohio), no one knew best when it came to treating the estimated 200,000 Americans diagnosed with a “strange ailment” called muscular dystrophy. This “very costly disease,” the article explained, baffled researchers, and although the Muscular Dystrophy Association, founded in 1950, was dedicated to “seeking the cause and a cure for this mysterious and fatal malady,” insufficient research funds kept progress at bay.

In the background, however, a relationship between the Muscular Dystrophy Association (MDA) and the International Association of Fire Fighters (IAFF) was heating up. This partnership would eventually produce a prolific fundraising endeavor called “Fill the Boot” — an annual donation drive that is celebrating its 60th anniversary this year. Throughout its six-decade evolution, IAFF members across the United States and Canada have continually strengthened the Fill the Boot campaign, and today, IAFF is MDA’s single-largest fundraising partner and most ardent crusader to find a cure for neuromuscular disease. 

Heart and ‘sole’

Start collecting your loose change and bills now in anticipation of  this year’s upcoming Fill the Boot drives — and encourage friends and family to do the same. For time and location details of upcoming drives in your area and how you can help, contact your local MDA office at (800) 572-1717.

Fill the Boot began as a good deed, but as the annual drive grew in prominence, IAFF soon became MDA’s largest national sponsor. In fact, the number of fire fighters who devoted their off-duty time to raise Fill the Boot funds grew so significantly and quickly that today the campaign helps to support research grants, as well as MDA summer camps for children, professional and public health education, and numerous other acts of generosity and commitment. 

Tom Boyle, MDA’s national vice president of organizational partnerships, sees today’s roughly 300,000 IAFF members’ dedication to MDA as an extension of their pledge to save lives — not only rescuing community citizens every day in the line of duty but also tirelessly helping to fund worldwide research efforts that will someday eradicate the 40-plus neuromuscular disorders under MDA’s umbrella. 

“Fill the Boot is much larger than a fundraising drive; it represents the caring relationship between fire fighters and their communities,” Boyle explains. “Americans view these men and women as heroes, saving lives every day and asking for nothing in return — no glory, no heroic credit, no fame. So when we see these fire fighters on a street corner, holding their boot and MDA signs, it’s just natural for us to roll down the window and pitch in what we can. For many, I think it’s a way of giving back to the heroes who so selflessly give to others.”

The prologue

In 1952, Charles J. Crowley and his wife, Geraldine, lived in Boston, where they were raising their two sons, both affected by muscular dystrophy. While the family comfortably provided the best life possible for their boys, Crowley looked into a metaphorical crystal ball and saw no future hope for children like his own. 

“He just couldn’t sit by and do nothing,” explains Suzanne Crowley Blaszak, the Crowley’s third and youngest child. Today, Crowley Blaszak, a 61-year-old retired teacher, speaks often and joyfully about Fill the Boot — as someone who has tirelessly worked all her life to raise such funds but also as someone living with muscular dystrophy herself, albeit a milder case than what eventually took her brothers’ lives. 

As Crowley Blaszak shares Fill the Boot’s history, she begins with her dad reaching out to his good buddy and IAFF member George Graney for help to raise money in support of muscular dystrophy research. As the story goes, the two rounded up 20 additional fire fighters from Graney’s Boston Local 718 and set off for a neighborhood door-to-door canister drive, which raised an impressive $5,000. The success of that initial effort and subsequent drives prompted the co-founders to attend IAFF’s 1954 national convention in Miami, where it was proposed and unanimously approved that MDA would be forever more IAFF’s “charity of choice.” That day, the fire fighters solidified their partnership with MDA, pledging that they would continue the fight until the battle is won.

Each year through Fill the Boot campaigns, thousands of fire fighters like those of the Cedar Rapids Fire Department (IAFF Local 11) in Cedar Rapids, Iowa, dedicate their time to raising money to find treatments and cures, to support families and to rally communities.

Now 60 years strong, the bond between IAFF and MDA remains, and in its mission to fight muscle disease, MDA knows it can count on the IAFF’s fundraising might. Crowley Blaszak attributes much of the relationship’s success to a mutual admiration for each other’s core mission. “Our fire fighters and MDA are both about saving lives,” she says. “I think their shared commitment to life strengthens the relationship; it’s why we’re so much closer to a cure today.”   

Stepping it up

Since 1954, IAFF has pulled in nearly $530 million for MDA, largely through the signature MDA Fill the Boot campaign. In recent years, IAFF has added a few more creative fundraising endeavors, including golf events, bowl-a-thons and softball tournaments. As a result, IAFF’s ongoing support today allows MDA to fund more than 250 research projects around the world; maintain a nationwide network of 200 medical clinics, including more than 40 MDA/ALS centers, for diagnostic and follow-up care; provide equipment repairs for those in need; and sponsor nearly 80 summer camps — all at no cost to campers’ families and created specifically for youngsters with neuromuscular diseases — across the United States. Of course, dollars alone cannot support the camp initiative. “This program would be impossible without the thousands of volunteers who devote their time to our campers, and chief among these volunteers are members of the International Association of Fire Fighters,” Boyle stresses (for more on IAFF ties to MDA summer camps, see Fire Up Some Fun).

As those with neuromuscular disease continue to benefit from the lifesaving research and support made possible through MDA fundraising efforts like IAFF’s, one has to wonder what drives these two organizations to keep expanding their relationship. IAFF General President Harold A. Schaitberger says the reason is really quite simple: “We both care. The fire fighters care about the citizens they serve. They coach little league games and build ramps for those who are physically impaired. That’s in addition to the incredible work they do professionally. And it’s clear that MDA cares just as much about the people they serve. So when a fire fighter holds out that boot in Phoenix, standing in 105-degree heat, or in Cleveland, raising funds in near-zero [degree] temperatures, they know that their personal commitment will benefit those with muscle disease. This level of trust made our relationship with MDA work back in 1954 — and until there is a cure, we plan to continue the partnership.”

And if last year’s Fill the Boot campaign is any indication, this partnership continues to thrive. But with IAFF members raising $26.2 million in the U.S. in 2013, and their Canadian counterparts adding another $2.5 million, MDA-funded research has even more support in its quest for that elusive cure.  

Donna Shryer is a freelance writer based in Chicago. 

At the end of every Fill the Boot fundraising drive for MDA, there’s no doubt that each boot — and every donation — counts. That one extra fire fighter who stood on the corner of “Elm and Main Streets” for five hours makes all the difference in the life of someone who needs assistance with annual equipment repairs — so that individuals with neuromuscular disease can continue living the most independent lives possible. And even one more dollar in that fire fighter’s boot makes all the difference in the life of someone seeking strength and encouragement from an MDA support group. 

However, any story about the 2013 Fill the Boot drive would be unfinished without a special shout-out to members of the Fairfax County Professional Fire Fighters and Paramedics Local 2068 of the International Association of Fire Fighters, who made history last year with a record-breaking collection of $602,580. The Fairfax County Fire Fighters’ Fill the Boot campaign total led the country for 2013, and it marked the first time any Fill the Boot drive has exceeded $600,000. Since taking up the boot in 1998, the Fairfax County fire fighters have collected more than $5.6 million for families affected by muscle disease in the Greater Washington, D.C., area.

IAFF General President Harold Schaitberger is quick to express his pride in every IAFF member’s contribution to the 2013 Fill the Boot campaign, although he does grant himself one extra-high five for the Fairfax County fire fighters. “This is my home local. It’s where my career began,” he shares. “Seeing my Local 2068 doing such incredible work and setting such a benchmark makes me so proud.”

Each year, MDA sends more than 3,500 youngsters, ages 6 to 17 and all diagnosed as having a neuromuscular disease, to a fun-filled week at one of nearly 80 MDA summer camps nationwide. Thanks to the support of donors and sponsors like the International Association of Fire Fighters (IAFF), MDA is able to provide life-changing summer camp experiences for these children and teens, all at no cost to their families. Activities, designed specifically for those with disabilities, include everything from adapted sports and horseback riding to talent shows and craft programs. While the kids’ laughter fills every campsite, it’s tough to tell who’s having more fun — the campers or the volunteer counselors, many of whom are members of the IAFF. These men and women selflessly give of their time year after year to serve as activity leaders, counselors and chief giggle-miesters. 

But IAFF’s presence is not limited to the camps. IAFF’s annual Fill the Boot campaign helps to support MDA’s summer camp program, as well as research, professional and public health education, medical and support services, repairs to medical equipment and much more. 

Although many fire fighters have helped out at MDA camps for years, it’s never camp-as-usual. Dinner may turn into a game, with fire fighters cooking for the kids and competing with other IAFF locals for the Silver Spatula Award, an honor given to the chefs of the best meal. Fire fighters come to camp ready to provide special memories and activities for the campers, which may include a luau or a visit from the local fire truck, rolling into the campgrounds with sirens blaring, engines roaring and an open invitation for campers to see the rig up close. 

And as each session ends, everyone returns home with priceless memories — kids and fire fighters, alike.

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