From the Summer 2022 issue of Fire Fighter Quarterly
Farmington Hills, MI Local 2659 Sean Beacome grew up knowing the heavy impact Amyotrophic Lateral Sclerosis (ALS) can have. His father, Dan, was diagnosed with the disease in 1977 when Sean was still a kid.
“My dad’s prognosis wasn’t good. His doctors only gave him two years to live,” recalls Beacome. “It was difficult to watch him deteriorate to a paraplegic and, eventually, quadriplegic. But my dad was a fighter. He was such a role model for how to maintain one’s spirit and dignity while living with such an awful disease.”
Since Dan was the breadwinner of the family, the Beacome family had to make changes and sacrifices. Treatment and resources were limited at the time, so it was not an easy task to find another source of income, let alone treatment and resources to assist Dan.
“Our family was very thankful for the assistance the MDA was able to provide, including a wheelchair and medical supplies,” says Beacome. “The support also gave us a little peace of mind during an overwhelming time.”
With the help of MDA, Dan kept up the fight and even participated in a clinical trial in 1985. However, his condition did not improve, and he was moved to a care facility.
Sean’s dad found a new purpose. He taught himself to paint by holding a paintbrush in his mouth. He was so good that his work was used for MDA’s postcard series on artists with ALS. In 1999, he was also featured on 60 Minutes. While he created many works of art, he considered his Old Barn painting his best effort.
Dan passed away from ALS in 2002, but the fight to raise awareness for the disease and the resources available through MDA lives on in Sean, who has served as Local 2649’s charitable fundraising coordinator for the last two years.
“It is rewarding to raise money to help families going through the same challenges we did,” says Beacome. “Because of the dollars our local and other IAFF affiliates raise, more treatment options and resources are now available.”
To help IAFF members impacted by the disease, the IAFF and MDA have launched a new web-based resource (firefighters.mda.org/als-resources). When fire fighters receive the diagnosis or even suspect that they may have the disease, these resources will help them find care and treatment and participate in clinical trials.