Champion Insights is a focused research initiative to understand why certain populations—such as elite athletes, military personnel, and first responders — are more likely to be diagnosed with ALS.

We’ve put together these Frequently Asked Questions to help you learn more about Champion Insights, what it is, how it works, and how you can get involved. Whether you’re considering participating, supporting the effort, or just curious about our approach, this section covers the most common questions about the program and its impact.

Who is Champion Insights studying?

Champion Insights is learning from individuals diagnosed with ALS who come from groups from the general populace where evidence points to higher risk of developing ALS. These individuals are likely to have maintained high levels of physical performance or training for many years, such as:

  • Military service members in physically demanding roles
  • Endurance athletes (e.g., long-distance runners, cyclists, triathletes)
  • Professional or collegiate sport athletes
  • First responders, such as firefighters, EMTs, and police officers

Why is Champion Insights studying these groups?

Sporadic ALS is challenging to study because its causes and risk drivers are not well understood and may differ from person to person. By focusing on populations with a higher-than-average incidence of ALS, researchers can investigate whether certain biological traits or environmental exposures contribute to this increased risk.

Research has shown that military service is associated with a 2X increased risk of ALS, while studies have also found elevated rates among elite athletes.¹,² Pinpointing genetic and molecular clues in these higher-risk groups could reveal new pathways toward treatments that benefit everyone living with ALS.

References:

1. Military service

Re DB, Yan B, Calderón-Garcidueñas L, Andrew AS, Tischbein M, Stommel EW. A perspective on persistent toxicants in veterans and amyotrophic lateral sclerosis: identifying exposures determining higher ALS risk. J Neurol.2022;269(5):2359-2377. doi:10.1007/s00415-021-10928-5. PMID: 34973105; PMCID: PMC9021134. 

2. Elite athletes

Daneshvar DH, Mez J, Alosco ML, Baucom ZH, Mahar I, Baugh CM, et al. Incidence of and mortality from amyotrophic lateral sclerosis in National Football League athletes. JAMA Netw Open. 2021;4(12):e2138801. doi:10.1001/jamanetworkopen.2021.38801. PMID: 34910152; PMCID: PMC8674746. 

What are examples of traits that may be unique to these groups?

One example of many is a variant in a gene called ACSL1, which helps muscles use fat for energy more efficiently—an advantage for endurance. However, when paired with years of intense physical demands, it may also place added stress on cells and potentially contribute to nerve damage. Understanding these links could reveal new insights into ALS that benefit all those affected.

How do you determine if someone qualifies for Champion Insights? 

Eligibility for Champion Insights is determined through a self-reported questionnaire. A person may qualify if they report having ALS and being or having been any of the following:

  • Professional, collegiate, or endurance athlete
  • Military service member
  • First responder

Who qualifies as an endurance athlete?

Participants are considered endurance athletes if they report having completed any of the following:

  • A marathon
  • An ultramarathon
  • An Ironman
  • A triathlon

Any varsity collegiate or professional athlete qualifies, regardless of the sport they played.

Eligibility criteria will be expanded based on the information learned from the first 200 people enrolled in the study. The purpose of expanding the eligibility criteria is to include those who may have high physical activity lifestyles and certain biological traits, but did not participate in any of the categories above.

How is Champion Insights different from the ARC Study?

The ARC Study is the longest-running natural history study in ALS and is open to anyone diagnosed with ALS or who is an asymptomatic gene carrier. Like the ARC Study, Champion Insights will collect a broad range of genetic, clinical, and molecular (“omics”) data to advance our overall understanding of ALS. However, Champion Insights is not a duplication of ARC’s work; it is specifically designed to gather detailed information relevant to these higher-risk groups, such as comprehensive histories of physical training, competition, and occupational exposures.

If I participated in the ARC Study and qualify for Champion Insights, can my existing data be used?

Yes, once qualified for Champion Insights, your existing data can be used in both programs.

What data will be collected through Champion Insights?

Champion Insights gathers a broad set of genetic, clinical, and molecular (“omics”) data, along with detailed history specific to this population, such as training, competition, and occupational demands.

Data collection methods may include:

  • In-home blood draws
  • Movement tracking with wearable devices
  • Lifestyle surveys

What sets this apart from other ALS studies?

No previous study has collected such a deep and integrated set of data on this specific high-risk population. This unique cohort combines multi-omics analysis, blood sample collection, continuous wearable monitoring, and open data access. Backed by partners like ALS TDI, Augie’s Quest, Answer ALS, Neuromine, Gates Ventures, and GATC Health, the study brings together unmatched expertise, global resources, and independent oversight.

How could this data be relevant for people with ALS outside of this subgroup?

Mechanisms uncovered in these groups could replicate in broader ALS cases or differentiate from them. Lessons on lipid metabolism, oxidative stress, and neuro‑inflammation may guide future drug development and trials for everyone.

How soon could findings help people living with ALS?

Biomarker and therapeutic target discovery and prioritization will begin immediately, and early findings may be available within the first year. Data will be available to qualified external research teams following data generation and quality control in similar timeframes.

What Organizations are Leading Champion Insights?

Champion Insights is led by Answer ALS and Augie’s Quest to Cure ALS, with the research conducted by the ALS Therapy Development Institute (ALS TDI).

Learn More About Champion Insights: