Fire fighters may face twice the risk of developing amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) compared to the general population, and a new national study aims to find out why.
The study, Champion Insights, is led by Answer ALS, Augie’s Quest to Cure ALS, and the ALS Therapy Development Institute (ALS TDI), with support from the Muscular Dystrophy Association (MDA). It is seeking participants who have been diagnosed with the disease.
If the study identifies occupational factors tied to ALS, the findings could influence presumptive legislation, workplace protections, and long-term health monitoring for fire fighters nationwide.
“Understanding if there is a link between ALS and firefighting is a priority for the IAFF and MDA,” said Racquel Cesnalis, MPH, PMP and IAFF Deputy Director, Occupational Health and Medicine. “Currently there is limited research looking at ALS and the occupation of fire fighters. The MDA-supported Champion Insights Study will help bridge that gap and hopefully lead to additional research.”
Existing studies suggest fire fighters have a two-fold risk of developing ALS, compared to the rest of the population.
“There are some theories out there, including exposure to environmental toxins or heavy metals like lead, head injuries, or heavy exertion. But nothing has been definitive,” said Brian Lin, PhD, Director of Research, MDA. “It’s encouraging to see how detailed the Champion Insights study is. Hopefully, the researchers will be able to identify some trends among participants and get closer to finding some answers.”
A few years ago, the IAFF, MDA, and other parties put together an ad hoc committee to address the lack of data on the fire fighter connection to ALS and the increased need for patient care resources. The committee includes three working groups: research/data, presumptive legislation, and resources/awareness.
The second two are still in infancy stages, but the research and data group is actively looking for opportunities that led to the organizers of the Champions Insights research project.
“MDA has been working in partnership with the IAFF in the fight for more research and better resources for ALS patients for more than 70 years,” said Jennie King, Vice President, Fire Fighter Partnerships at MDA. “Together, we have been able to make some amazing progress. But there is still work to be done. The Champions Insights project will be an important next step.”
The coalition of ALS groups requested and was awarded a grant for the project. Champion Insights seeks to uncover critical genetic and metabolic mechanisms that may explain the significantly higher incidence of ALS among fire fighters as well as endurance athletes and military service members.
Participating fire fighters, first responders, and elite athletes will provide in-home blood samples and answer multiple questionnaires. The study has a target enrollment of 500.
