May 4th is International Fire Fighters Day, a chance to recognize the live-saving work, valor and sacrifices of the men and women who put themselves in harm’s way so that others can be protected. For MDA, it is an opportunity to recognize one our staunchest allies in the fight against against muscular dystrophy and related diseases: the International Association of Fire Fighters. Since 1954 fire fighters have been on the front lines supporting MDA families, sharing their time and talent, and raising more than a half billion dollars for MDA through the “Fill the Boot” program.
Considering the enormity of their contributions, fire fighters are heroes to MDA families and countless others who have been touched by their generosity.
There is no better example of that giving spirit than what Pittsburgh Fire Fighters IAFF Local No. 1 did when one of their own was impacted by neuromuscular disease. After decades of filling their boots, the cause got personal for this dedicated group.
Matt Onyshko had been a proud member of the Pittsburgh Fire Fighters IAFF Local No. 1 for a little more than a year when he was diagnosed with ALS (amyotrophic lateral sclerosis) at the age of 27. The former college football player and father of two continued working as a fire fighter for a few more years but stopped in 2012 due to the disease’s progression. He now uses a wheelchair, feeding tube and an eyegaze communication device.
Thanks to a “leave bank,” Onyshko’s fellow fire fighters have worked his shifts for the past five years so he can continue collecting a paycheck and receiving benefits. He’s eligible to receive his disability pension later this year, after 10 years on the job.
“The fire fighters have been remarkable; it’s an amazing brotherhood,” says Matt’s wife, Jessica.
Fill the Boot supports MDA research and services, including a nationwide network of more than 150 MDA Care Centers and nearly 50 centers with the MDA ALS Care Center designation. Jessica says her husband visits the MDA ALS Care Center at the University of Pittsburgh Medical Center every six months. “[The MDA Car Center] puts together the respiratory therapist and the neurologists, so we get to see all their doctors and specialists in one day without having to make multiple trips,” she says. “Getting out of the house can take hours, so it’s a real blessing.” Fortunately, the Onyshkos don’t have to travel far to their Care Center. Jessica says some patients travel from several hours away to receive the specialized care available there.
The Pittsburgh fire fighters also hold frequent fundraisers for the Onyshko family, such as charity hockey games, golf tournaments and CrossFit workouts, to help cover some of their other costs. The couple even appeared on the “Ellen DeGeneres Show” and received a home makeover and a surprise check for $50,000. “That was so much fun, and [we made] so many awesome memories,” Jessica says of the experience. “Everything in my house was so plain. We pretty much lived in a bachelor pad, and they made it a home.”
Give Muscular Dystrophy the Boot: How Fill the Boot donations help fund research, care and support for families
Since 1954, the IAFF has raised more than $607 million to help kids and adults with muscular dystrophy, ALS and related neuromuscular diseases. To support MDA’s Fill the Boot campaign, thousands of fire fighters hit the streets or storefronts seeking donations from motorists, pedestrians and others. In 2016, more than 100,000 fire fighters participated in more than 1,600 Fill the Boot events across the country, collectively raising more than $24 million.
Fill the Boot donations help fund research across diseases in MDA’s program to help accelerate treatments and cures, and they help provide highly specialized multidisciplinary care for kids and adults from day one at MDA Care Centers. Contributions also help MDA provide additional services and support to families, including MDA’s equipment assistance program and the MDA Resource Center. IAFF contributions also help send thousands of kids to MDA Summer Camp each year where they experience a week of freedom and independence and where they can truly live unlimited — all at no cost to their families.
Help “Fill the Boot” in your local community!