When Aidan Mace first joined East Hartford, CT Local 1548, one of his favorite traditions was helping with the Muscular Dystrophy Association (MDA) Fill the Boot campaign.
Years later, that mission became personal. “I had a nagging shoulder injury, and I thought it was a pinched nerve,” he said. “Then one night at a fire, I went to ventilate a window, and my shoulders kept giving out.”
After months of tests, he was diagnosed with facioscapulohumeral muscular dystrophy (FSHD). The diagnosis ended his time in the fire service, but not his commitment to serve.
Mace’s story is a reminder of why Fill the Boot matters – every donation helps fund research, care, and advocacy for families living with neuromuscular disease.
This week, he joined over 100 advocates from the MDA across 27 states on Capitol Hill to discuss critical priorities, including continued funding for National Institute of Health (NIH) research, support for caregivers, and access to affordable healthcare.
“Being here is powerful,” said Mace, who now works for MDA. “Nobody can advocate better than we can. We know what it’s like from the physical challenges, the mental load, the sacrifices our families make. And we’re showing our lawmakers the real faces behind the statistics.”
Nobody can advocate better than we can. We know what it’s like from the physical challenges, the mental load, the sacrifices our families make. And we’re showing our lawmakers the real faces behind the statistics.
aidan mace, former local 1548 member and MDA Accounts manager for fire fighter partnerships
Jennie King, MDA’s vice president of fire fighter and organizational partnerships, highlighted efforts from the IAFF’s Fill the Boot campaign for making this advocacy possible.
“Fire fighters have been filling the boot for over 71 years and have raised more than $700 million,” said King. “That money supports research, care centers, and programs that help families live longer, stronger lives. And advocacy is a huge part of that, and we couldn’t do it without the IAFF.”
The IAFF-MDA partnership continues to deliver real results. It has funded programs that brought 20 new treatments to market in the last five years, supported more than 150 MDA Care Centers, and connected hundreds of families through summer camps and family retreats.
Among the advocates walking the Hill was Gabrielle Runyon, a 23-year-old Tennessee State University graduate student and MDA state ambassador from Kentucky. Diagnosed with spinal muscular atrophy (SMA) Type 2 at the age of one, her future once felt uncertain.
“The doctors told my parents to take me home, make me comfortable, maybe take me to Disney World,” she said. “So they did, and then we went every single year after that.”
Today, Runyon is thriving and using her voice to help others. “I’ve always been an advocate,” she said. “It’s an honor to speak up for my community and for people who can’t always speak for themselves.”
Her mother, Aurlisa Alwood, joined her on the Hill to advocate for research funding and caregiver support.
“The last time we were here, we were advocating for newborn screening, which has impacted us personally. Gabrielle was diagnosed when she was 2-years-old, and if we had newborn screening then, we may have had interventions before her condition declined,” said Alwood. “This time around, we’re asking for research and funding at the level needed for rare diseases to find cures. Now we have treatments, but we’re looking for a cure to truly change these kids’ lives.”
She highlighted the impact of fire fighters and the IAFF through the Fill the Boot program. “When Gabrielle was little, flu shots weren’t covered, but Fill the Boot helped the MDA provide them for free. That might seem small, but for a child with a respiratory illness, it meant everything.”
When Gabrielle was little, flu shots weren’t covered, but Fill the Boot helped the MDA provide them for free. That might seem small, but for a child with a respiratory illness, it meant everything.
aurlisa alwood, gabrielle’s mother
For Mace, walking the Hill and seeing families like Gabrielle’s reinforces the meaning behind every boot filled.
“The money collected in those boots funds the research, care, and advocacy that keeps us moving forward. It’s the same teamwork and commitment that defines the fire service, just in a different kind of fight. And knowing that makes every call, every donation, and every step worth it.”
It’s a reminder that the work fire fighters do through Fill the Boot reaches far beyond the streets, helping families and funding research that changes lives.
“I’m really proud of what we’ve been able to do over the last 70 years,” he said. “We fund critical research. If there was one magic pill that made me eligible to be a fire fighter again, I’d do it tomorrow. Every dollar and every boot really make a difference.”
To learn more about the IAFF’s partnership with MDA, visit here.
