United for Answers: Leading ALS Organizations Announce 'Champion Insights' to Unlock Why Athletes and Military Members Face Higher ALS Risk

State-of-the-art remote-participation research seeks to understand how genetic factors linked to intense activities and lipid metabolism may increase ALS susceptibility

NEW ORLEANS, Aug. 13, 2025 Answer ALS, in collaboration with ALS Therapy Development Institute (ALS TDI) and Augie's Quest, today announced plans to launch , an ambitious research initiative designed to uncover critical genetic and metabolic mechanisms that may explain the significantly higher incidence of amyotrophic lateral sclerosis (ALS) among endurance athletes, military service members, and potentially other high-performing populations.

ALS is a devastating neurodegenerative disease with no cure, affecting more than 5,000 Americans annually, and shows a 25% higher incidence in high-performing groups like athletes and military members compared to the general population. Recent European studies highlight endurance athletes, suggesting shared genetic factors may underlie both exceptional performance and increased ALS risk.

Champion Insights will meet this challenge head-on by using remote-participation technology to turn participants' own homes into real-world research sites. The program will collect blood samples and clinical data from up to 500 participants, eliminating logistical and geographic barriers and greatly expanding who can take part in ALS research. Former NFL athlete Steve Gleason, founder of Answer ALS and Team Gleason, which provides critical equipment and services to the ALS community, will be the first to participate, remotely giving a blood sample to officially launch the initiative.

"Understanding ALS requires fundamentally rethinking how research is done," Gleason explained. "By empowering people to conveniently participate from home, Champion Insights can hopefully unravel why elite athletes and high performers are disproportionately impacted. It's precisely the kind of science we can't afford to overlook. I'm giving my blood and self to be participant #1, but because I ordinarily prefer #37, I'm challenging 36 more former athletes, military members, and adrenaline-driven humans with ALS to join me."

Fernando Vieira, M.D., CEO and CSO, of ALS TDI, highlighted Champion Insights' transformative potential:

"To solve ALS, research must prioritize the specific genetic and metabolic pathways that distinguish certain populations. Champion Insights does exactly this," said Vieira. "By allowing higher-risk groups such as elite athletes and military personnel to participate remotely, we can rapidly generate actionable data on lipid metabolism, genetics, and ALS. This innovative approach will meaningfully accelerate therapeutic discovery."

"Augie Nieto believed the most meaningful progress starts with motivation and passion," said Shannon K. Shryne, President and Co-Founder of Augie's Quest. "As both an athlete and a visionary in the fitness world, he pushed for approaches that challenged convention and aimed higher. Champion Insights reflects that spirit — targeting the deeper biological patterns that may explain ALS risk in communities like the one Augie belonged to. Our mission is to make sure bold ideas like this have the support they need to go the distance."

Champion Insights integrates seamlessly with Answer ALS's Neuromine Data Portal — the world's largest openly accessible ALS research repository — adding critical new layers of biological, clinical, and genetic data to drive global ALS research collaboration.

Clare Durrett, Managing Director of Answer ALS, highlighted the strategic importance of this comprehensive approach:

"The mysteries of ALS will only be answered by asking precisely the right questions, to precisely the right populations," said Durrett. "Champion Insights brings together advanced genomic science, detailed natural history, and a wide array of omics, combined with seamless remote-participation technology, into a single, streamlined initiative. This accelerates our ability to understand and ultimately disrupt the mechanisms behind ALS."

"As an aviator, we trained to operate at our best, physically, mentally, and professionally. That relentless pursuit of excellence is something we take pride in. Now, science is beginning to uncover that some of the same traits that drive high performers, whether in the military, athletics, or beyond, may also be linked to increased ALS risk. That's why Champion Insights is so important. It can help us explore the 'why' to unlock answers. We owe it to every warrior, competitor, and teammate impacted by ALS to keep searching," said Matt Bellina, retired U.S. Navy Lieutenant Commander and person living with ALS.

The anticipated start date for recruiting participants will be late November 2025. High-performance athletes and military service members diagnosed with ALS who are interested in participating or learning more about Champion Insights can visit . Other populations determined to exhibit a higher incidence will be considered for inclusion.

About Answer ALSAnswer ALS is the most comprehensive ALS research consortium in history, producing more ALS data and biological samples than has ever been amassed, while openly sharing with the global research community. These data and samples are used to investigate the unique pathways of each variation of ALS and begin to develop and test the right treatments or cure. Answer ALS is an unprecedented approach to understanding and defeating the disease. Headquartered in New Orleans and Washington, D.C., Answer ALS stands at the forefront of global efforts to eradicate the disease, supported by research partners and advocates worldwide.

For more information, visit us at , , , and .

About ALS TDIThe ALS Therapy Development Institute (ALS TDI) is the first and largest nonprofit research institute dedicated solely to discovering and inventing effective treatments for ALS.

ALS TDI takes a multifaceted approach to ending ALS—inventing and advancing targeted treatments, identifying causes and risk factors, and cultivating a research ecosystem in which ALS drug development is effective and efficient. In its state-of-the-art labs, ALS TDI researchers drive drug discovery across multiple stages, working to advance the many therapies necessary for addressing the various types of ALS. , , , and .

About Augie's QuestFounded by Augie Nieto, Augie's Quest to Cure ALS is the unwavering force driving breakthroughs in ALS research, defying limitations, and empowering hope for a future without this devastating disease. We are dedicated to funding innovative research to find effective treatments and ultimately a cure, while advancing the field and translating scientific knowledge into real-world solutions. For more information, visit us at , , , and .

Media Contacts:Kissy BlackAnswer ALS

Roxan Triolo OlivasLotos Nile

Meghan LawlorALS Therapy Development Institute

Shannon ShryneAugie's Quest

SOURCE Answer ALS