Fire fighters are among MDA’s most dedicated supporters. These men and women have a special connection to the cause
Editor's note: It's with a heavy heart that we at MDA mourn the loss of Rebecca "Becky" Fulcher, who is featured in this article. Becky, who lived with Friedreich’s ataxia and was actively involved with MDA, passed away on April 5, 2017, in an automobile accident on her way home from a concert with family members and friends. Our sincerest condolences are with Becky’s family and friends during this enormously painful time.
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 receive 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. “The fact that the city allows them to have this buddy system is amazing.”
From boot to beneficiary
That willingness to give their time to help others extends beyond fellow fire fighters to all individuals and families living with muscular dystrophy, ALS and related life-threatening diseases. For more than 60 years, fire fighters have been among MDA’s strongest supporters through the Fill the Boot fundraising campaign. In some cases, like the fire fighters at Pittsburgh Local No. 1, the cause directly affects one of their own.
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 Care 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.”
Looking out for families
Jason Mundell is training and safety lieutenant for Mulvane Fire Rescue, operations lieutenant for Wichita Fire Department and a member of IAFF Local No. 135 in Kansas. Mundell has been with Mulvane Fire Rescue for 24 years, but he first got involved with Fill the Boot at age 14 as a junior fire fighter because a childhood friend had Duchenne muscular dystrophy (DMD).
Mundell has been an MDA coordinator, organizing local Fill the Boot events, for more than 10 years now. He also adopted a son and daughter who both have Charcot-Marie-Tooth disease (CMT) and attend the MDA Care Center at Via Christi Medical Center in Wichita.
In addition to supporting multidisciplinary care at MDA Care Centers nationwide, Fill the Boot helps fund MDA Summer Camps across the country, and Mundell’s children, both 10, love going to MDA Summer Camp. “That’s something they really look forward to,” Mundell says. “They talk about it all year-round: the friends they meet and their counselors.” The kids love zip-lining, archery and, especially, dress-up days at camp.
The fire fighters in Mundell’s department know his kids, and he thinks that helps motivate them to raise money for Fill the Boot. “Knowing that they have a fellow fire fighter with children who have a neuromuscular disease, I think it’s really helped raise their awareness of it,” he adds.
Roger Lopez, assistant to the general president and IAFF-MDA national coordinator, has volunteered at MDA Summer Camps for 14 years and seen the impact of Fill the Boot firsthand. “By the end of the week, [the kids] are having such a great time, they don’t want to go home,” he says. “It’s such an amazing experience. For us as fire fighters, we’ve really taken this mission to heart.”
While fire fighters all around the country are enthusiastic about hitting the streets with boots in hand for MDA, they especially enjoy getting support from their communities. Gina Rader’s son Grant was diagnosed with mitochondrial complex 1 deficiency in 2007. Since then, they’ve been delivering bottled water to fire fighters in Wichita during Fill the Boot events. “We’ve developed a special bond with the fire fighters — they almost start to become part of your family,” Rader says.
Her son Grant, now 13, has been attending MDA Summer Camp every year since his diagnosis and loves archery, crafts, swimming and making new friends. “Even a single dollar makes a difference in sending these kids to camp,” she adds.
Similarly, Becky Fulcher, who was diagnosed with Friedreich’s ataxia (FA) at age 8, attended MDA Summer Camp every year until she was 17. She’s also attended 11 Fill the Boot events in her hometown of McPherson, Kansas. “My favorite memories are when my family would come out and hang out for a while,” Fulcher says. “My aunt always brought my cousins and would give them money to drop in my boot.”
Now 21, Fulcher is studying communications at Wichita State University. “It’s a pretty small town,” Fulcher says. “We don’t have very many people affected by neuromuscular diseases.” Knowing that the fire fighters of the McPherson Fire Department are working hard for her and others like her has made such an impact on Fulcher that she drives back to her hometown each year to support the department during their Fill the Boot events. “They know me, and they have been a big part of the community,” she says.
Susan Johnston Taylor is a freelance writer based in Austin, Texas.
Give Muscular Dystrophy the Boot: How Fill the Boot donations help fund research, care and support for families
Since 1954, the International Association of Fire Fighters (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.
To learn how you can support Fill the Boot, visit mda.org/get-involved/fill-the-boot.
Looking for More?
IAFF has been a strong MDA supporter and partner for more than 60 years. Read Giving Muscular Dystrophy the Boot to learn about how Fill the Boot started and the impact it has had over the decades.