Study probes high ALS risk in elite athletes and other ‘champions’
500 participants sought for in-home research effort
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- Elite athletes, veterans, and first responders face a significantly higher risk of ALS.
- A study seeks 500 participants to explore genetic, environmental, and lifestyle factors.
- Goal: identify new disease pathways, biomarkers, and therapeutic targets.
Elite athletes, military veterans, first responders, and other high performers have a significantly higher risk of developing amyotrophic lateral sclerosis (ALS) than the general population, and a new study aims to find out why.
The initiative, Champion Insights, is seeking up to 500 participants to examine how genetic, biological, environmental, and lifestyle factors may differ across these groups and whether some may contribute to the increased ALS risk. Participants will contribute from their homes using an in-home blood collection service and online clinical surveys.
The findings may also help researchers identify new disease pathways and biomarkers, and find potential therapeutic targets relevant to all people living with ALS.
Former NFL player and ALS advocate Steve Gleason is the first participant in the initiative, led by Answer ALS and Augie’s Quest to Cure ALS. Gleason, who founded Answer ALS and Team Gleason, provided a blood sample at home to launch the project. Others who have committed to participating include Matt Bellina, a retired U.S. Navy lieutenant commander; Kerry Goode, a former NFL player and founder of Goode Foundation; Tim Green, also a former NFL player and founder of Tackle ALS; Andrea Lytle Peet, an elite long-distance runner and founder of Team Drea; Johnny Rodriguez, an athlete and coach who founded Athletes vs. ALS; and Eric Stevens, a former NFL player and firefighter who founded axeALS.
“Ten years ago, we set out to build the most comprehensive, open ALS research effort ever, and together, we made it happen,” Gleason said in an Answer ALS press release. “Now we’re taking the next big step with Champion Insights, and I’m honored to be the first participant.”
High performers may be twice as likely to develop ALS
“By making it possible for high-performing athletes, veterans, and first responders, who face ALS at significantly higher rates, to contribute remotely from home, on their own schedule and in their own space, we remove barriers and open the door to faster, deeper understanding of why these groups are hit so hard,” Gleason said. “We believe these insights can help lead to more answers about ALS and, ultimately, treatments for everyone.”
Evidence suggests that people in high-performance professions may be twice as likely to develop ALS. Champion Insights aims to identify the biological mechanisms underlying this vulnerability, including factors related to intense physical activity and fat metabolism.
The ALS Therapy Development Institute (ALS TDI) is leading the research in partnership with Onpoint Scientific. To help ensure strong representation from firefighters, the project received $100,000 from axeALS and $200,000 from the Muscular Dystrophy Association, which has a longstanding partnership with the International Association of Fire Fighters.
“We have known for a long time that those who push their bodies to the absolute limit face a higher risk of ALS,” said Fernando Vieira, MD, CEO and chief scientific officer of ALS TDI. “Champion Insights allows us to move beyond statistics and into the biology of the disease.”
Champion Insights will also establish scientific and patient advisory boards that will provide ongoing guidance on ethics, methodology, and real-world relevance.
“By putting our collection tools into the hands of 500 high performers, we are capturing a massive dataset that was previously unreachable,” Vieira said. “Our goal is to identify the specific genetic and environmental signals that will lead us to new biomarkers and, ultimately, effective treatments.”
