This alarming finding follows a July 2026 Lancet study of nearly 20,000 former NFL players, which found that those who died of ALS before age 50 did so at rates dramatically higher than their peers in the general population.

These studies do not mean football causes every case of CTE or ALS, nor do they solve complex mysteries surrounding neurodegenerative disease. What they demonstrate is something more fundamental: Like a football coach scanning post-game statistics, we cannot understand patterns without the data to reveal them. 

Scientists are still trying to understand why people develop diseases like ALS, Parkinson’s, and frontotemporal degeneration, or FTD. Genetics explains some cases, but not all. Researchers are also investigating environmental and occupational factors. (Parkinson’s, for example, has been linked to exposure to certain pesticides, including paraquat, which the EPA is vowing to investigate). 

But finding these types of connections requires more than individual medical records. It requires understanding where diseases are occurring, and whether diagnoses cluster around particular occupations, communities, or exposures.

Yet our systems for detecting those signals remain underdeveloped. CTE illustrates the problem dramatically: Because it can currently be definitively diagnosed only after death, researchers have had to painstakingly build datasets, brain by donated brain. Other neurodegenerative diseases present different challenges, but the underlying need is similar. We need better population-level information.

And this is where celebrity spotlights, like the Ice Bucket Challenge, can change the game.

Bruce Willis’s diagnosis with FTD, for example, transformed a disease most Americans had never heard of into a national conversation. His wife, Emma Heming Willis, has since become an outspoken advocate for families affected by FTD — and for efforts to collect better information about it.

Heming Willis, for example, played a key role in promoting California Senate Bill 1047, a bipartisan proposal that would add FTD to the state’s Neurodegenerative Disease Registry, which already tracks Alzheimer’s, Parkinson’s, ALS, multiple sclerosis, Huntington’s disease, and others. The bill passed the state Legislature last week and is headed to Gov. Gavin Newsom’s desk. 

But the significance extends beyond one disease or one bill. Registries and data empower researchers to identify patterns that physicians, hospitals, and families would not otherwise see.

And that’s crucial because, individually, a diagnosis is a tragedy. Collectively — from farmers to football players — diagnoses become a signal.

WE KEEP FINDING CTE IN YOUNG BRAINS, BUT SENDING THEM BACK ON THE FIELD ANYWAY

The original Ice Bucket Challenge put ALS on the pop-culture map. Willis’s diagnosis has brought unprecedented attention to FTD. And football’s reckoning with CTE is forcing Americans to confront brain-health questions that were once largely confined to laboratories.

But public attention must be the beginning, not the end. We should not have to wait for a beloved actor to receive a devastating diagnosis, an NFL star to disclose an illness, or researchers to reconstruct decades of disease after death to discover patterns that may have been hiding in plain sight during life. Better data can help. 

Nora Kenney Mittiga is communications director at End Chronic Disease.