The IAFF’s 72-year-partnership with the MDA took center stage at the 58th Convention, recognizing more than $720 million raised to fight over 300 neuromuscular diseases.
“As fire fighters, we’re all in and that’s why we’re raising funds for therapies and treatments,” General President Edward Kelly said.
As fire fighters, we’re all in and that’s why we’re raising funds for therapies and treatments.
General President Edward Kelly
He shared a video of a conversation with Bob Hook, a retired Los Angeles County, CA Local 1014 fire fighter living with ALS.
“I didn’t understand and I didn’t want to believe it the first year I was diagnosed. But after that it became a mission,” said Hook. “So, let’s help everyone involved.”
Hook also issued a call to action for fundraising. “You need to really push this out there. Basically, if it’s not for you, it’s for one of your brothers.”
Funds raised through Fill the Boot have contributed to the development of more than 30 FDA improved treatments in the last decade. In 2025 alone, six new treatments for neuromuscular disease received FDA approval, expanding treatment options for people with neuromuscular diseases.
Outside of Fill the Boot, IAFF members participated in the Trans-NH Bike Ride, held this past June, and 21 fire fighters served as counselors for the MDA Summer Camp in 2025, which provides barrier-free experiences for children, young adults, and families affected by neuromuscular diseases.
Dr. Sharon Hesterlee, president and CEO of MDA, spoke about the partnership between MDA and the IAFF to treat neuromuscular diseases. “The key thing I wanted to say is thank you, what you do makes a difference, and it’s important to us,” said Hesterlee. “You got our back. We got your back.”
That partnership is also advancing research into why fire fighters may be at increased risk for developing ALS, also known as Lou Gehrig’s disease. Hesterlee pointed to Champion Insights, a new study examining why certain groups – including first responders, high-performance athletes, and military personnel – appear to have a higher risk of developing ALS. MDA awarded the study a $200,000 grant to ensure fire fighters are well-represented in the research.
“Because we have this close relationship, when we started seeing reports that the firefighting profession might have a connection with ALS, we asked ‘what can we do’ immediately,” said Hesterlee.
During the 58th convention, delegates passed Resolution No.54, supporting research into occupational neurodegenerative disorders among fire fighters. The resolution strengthens the IAFF’s ability to invest in research on the relationship between fire service occupational exposures and neurodegenerative disorders, with the goal of developing preventative measures and establishing the evidence needed for occupational disease presumptions.
Several fire fighters spoke in support of the resolution, including members personally affected by neurodegenerative disorders.
For more about the IAFF-MDA partnership, visit here.
