A Fire Fighter’s Lasting Impact on the Fight Against ALS: Bob McAlvey’s Life & Legacy

Monty Nye

The mission to find treatment for amyotrophic lateral sclerosis (ALS) hits especially close to home for fire fighters, with research revealing that they are twice as likely to develop the disease. For Monty Nye, his commitment to the fight to end ALS is fueled by a deeply personal connection – and provides a meaningful opportunity to continue the legacy of his close friend, Bob McAlvey.

A man on a mission 

The International Association of Fire Fighters (IAFF) has a long-standing commitment to serving the neuromuscular disease community through their powerful partnership with MDA. Monty, a retired Captain Fire Fighter Paramedic with Meridian Township, Michigan, and IAFF Local 1600, spent decades of service significantly contributing to that partnership. The 64-year-old spent his career raising awareness and critical funds through the Fill the Boot campaign and facilitating MDA Boot Camps to train other fire fighters.

“I was appointed as the MDA liaison for the Michigan Professional Fire Fighters Union (MPFFU) in 2004 and every year we put on Boot Camps,” Monty says. “We bring fire fighters together from across the entire state and teach them how to put on a safe and effective Fill the Boot campaign. They get to meet families from the MDA community and build lifelong bonds with them. We get to see them grow. One of the coolest things was seeing a young lady that had been to our Boot Camp who started taking Spinraza when it came out in 2016, and we got to see the effects of that treatment on her over the next couple of years. And it dramatically changed her life.”

Monty at a Fill the Boot event in 2005.

Witnessing firsthand the life-changing implications of new treatments made possible by Fill the Boot efforts offers a full-circle perspective, reminding Monty and his team that what they are doing to support the cause is truly impactful.

Although he retired from active service as a fire fighter in 2014, his commitment to continuing that impact was far from over. Passionate about maintaining his role as a liaison between MPFFU and MDA, Monty was elected Vice President of the 5^th District in the Michigan Professional Fire Fighters State Union, where he remains active with the IAFF and continues to serve as an MDA/MPFFU Liaison. He accepted a part-time position with MDA as a Government Relations and Ordinance Specialist for the MDA Fire Fighter Partnership Team and became active with the MDA Advocacy Team.

Monty advocating in Washington D.C.

In his position with MDA, Monty ensures that cities and towns allow Fill the Boot campaigns. He is responsible for researching ordinance guidelines and meeting with local municipalities to advocate for changes in street ordinances, when necessary, sometimes going so far as to have laws changed. His efforts ensure that critical funds can be procured through generous donations that significantly increase research funding.

“I love doing it,” Monty says. “I love a good fight.”  For Monty, fighting the good fight to cultivate and secure effective Fill the Boot campaigns and advocating for medical research funding is a key component in the larger battle to end ALS. His commitment to that battle is a meaningful way of honoring Bob, his fellow fire fighter and close friend who passed away from ALS in 2006.

An unbreakable bond

Monty met Bob when he joined the fire department in 1990 and the two quickly became close friends. At the station and outside of work, the men forged an unbreakable bond of brotherhood. Bob, a nature lover, talented cook, impressive athlete, and all-around knowledgeable guy, shared many of his future dreams with Monty. Bob owned a large property that he wanted to build a home on and hoped to eventually create a program for school children to visit and learn about animals and the environment.

Monty and Bob McAlvey in 2004.

“He loved sharing his expertise and love of nature. Bob was the kind of guy that everyone went to – if you had a question about anything, you could ask Bob. You could find a piece of wood, a bug, a snake, anything… ask him what it was, and he could tell you,” Monty says. “He could do anything. He could make an apple pie from scratch. A friend just called the other day to get one of Bob’s recipes from me.”

Bob exemplified the loyalty, stamina, bravery, and servitude characteristically attributed to fire fighters. He was committed to keeping his community safe, providing for his family, and advocating for others. His sense of humor and easy readiness to help others drew people to him, aspects of his personality that Monty admired as their friendship deepened over the years.

When Bob was diagnosed with ALS at the age of 44, Monty and their entire IAFF Local came together to support him, his wife, and his five sons. His fellow fire fighters played a vital role in bringing Bob’s dreams to build a home on his property to fruition and Monty adopted the role as a steadfast advocate for Bob’s care.

Unwavering support

Bob had dreamt of an eco-friendly home, with heated flooring and solid concrete walls and siding designed to reflect his passion for ecology and nature. As his physical limitations increased, Bob’s community of friends and fire fighters stepped in and built his dream home for him, creating a physical, lasting representation of his incredible foundation of support.

Bob and Monty in 2005.

“We were there almost every day,” Monty recalls. “Bob’s cousin coordinated the plans. We all got together, all of the local departments from up to 50 miles away, and helped build this house to make it a reality for Bob. And he was able to move in and live there before he passed. His family still lives there today.”

In addition to helping build Bob’s dream home, Local 1600 offered unwavering support to assist Bob and his family as they navigated his ALS journey. Monty often drove Bob and his wife to the MDA Care Center at Michigan State University, accompanying them on appointments and offering support as they processed the progression of his disease. When Bob’s speech became difficult, Monty spoke up as his advocate, especially during hospitalizations with general practitioners who did not have expertise in ALS or the equipment that Bob needed.

Monty and Local 1600  made sure that Bob had someone with him along every step of his journey, at home and during hospitalizations. When Bob passed away, Local 1600 provided support and guidance to his wife and children, offering compassion through their grief and ensuring that they received necessary benefits.

“The most important thing that you can do for someone is to listen to that person, to be present and be their advocate,” Monty says. “As someone that loves them, be there. And we as fire fighters, and everyone else who wants to make a difference, can do a lot to raise money for research.”

Through it all, Bob remained dedicated to tirelessly raising awareness and funds for neuromuscular disease research, hoping to contribute to a brighter future for those to come after him.

The magic dollar

Now, nearly twenty years after Bob’s passing, Monty fondly recalls Bob’s sense of humor, optimism, and steadfast commitment to fighting to end ALS.

Monty facilitating an MDA Boot Camp.

“His smile stands out in my mind, the smile that he would get when he got one over on someone or won something,” Monty says. “But the most impactful memory I have of Bob is from a day when we were out doing a Fill the Boot collection in late August, and it was incredibly hot.”

Monty remembers walking the quarter of the block back to the station from the intersection where the fire fighters were collecting, grumbling about the heat. He entered the station hot, tired, sweaty, and ready for a break.

“I am sure I was complaining,” Monty says. “Bob was already using a wheelchair and speaking through a communication device at that time, and he wasn’t physically able to be out collecting with us. It took him awhile to type out what he was saying, but I knew he was chewing me out and about to tell me to suck it up. Bob said, ‘You are able to get out there and do it – so do it. What if one of those cars going by has that magic dollar and you are sitting in here complaining?’ And it impacted all of us at the station. To this day, we still talk about that magic dollar at every MDA Boot Camp.”

A lasting legacy

“He was a great guy – that wraps it all up,” Monty says of his dear friend. “Father, fire fighter, wrestler, educator… he was just great. Someone you are proud to call a friend. And he never gave up fighting for a cure or coaching us to get back out there. Right up until his last days, he was talking about MDA and what he could do to fight for the cause.”

Bob McAlvey

Bob was a coach to all of those around him, taking his own diagnosis in stride and redirecting his focus to what he could do to bring awareness to ALS. He participated in Fill the Boot, went to the MDA Telethon and other events, and did public service announcements throughout the progression of his disease. Before he lost his speech, Bob recorded a video to motivate new fire fighters to passionately join the fight to end ALS, an emotional and powerful video that is still used today at MDA Boot Camps.

“Bob continues to impact others and support the cause through his video,” Monty says. “He wanted to be able to motivate our guys at future Boot Camps, so he recorded himself sharing his experience with the progression of his disease, how it affected him, and why people need to keep fighting.”

Bob’s legacy continues to inspire others and serves as a reminder of the powerful impact fire fighters across the country have on the future of neuromuscular treatments. His memory fuels the fight against ALS and ignites hope.