<p>A fall chill is in the air, and football season is underway. Former NFL star Chris Johnson recently revealed that he is living with ALS at the age of 39, helping to revive the Ice Bucket Challenge phenomenon that once filled social media with videos of individuals dumping buckets of freezing water over their heads.</p>
<p>Johnson’s efforts come as football is confronting a range of unsettling neurodegenerative findings.</p>
<p>An August 2026 BMJ study found that at least one in four former NFL players who died between 2016 and 2021 had chronic traumatic encephalopathy, or CTE. Researchers believe the true prevalence could vary substantially because only a small, self-selected fraction of former players underwent postmortem examination.</p>
<p>This 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 significantly higher than their peers in the general population.</p>
<p>These studies do not imply that football causes every case of CTE or ALS, nor do they solve the complex mysteries surrounding neurodegenerative diseases. They demonstrate a fundamental issue: without sufficient data, understanding patterns in these diseases is challenging.</p>
<p>Scientists are still trying to understand why individuals develop diseases like ALS, Parkinson’s, and frontotemporal degeneration (FTD). Genetics explains some cases, but not all. Researchers are also investigating environmental and occupational factors. For example, Parkinson’s has been linked to exposure to certain pesticides, including paraquat, which the EPA is vowing to investigate.</p>
<p>Finding these types of connections requires more than individual medical records; it necessitates understanding where diseases are occurring and whether diagnoses cluster around particular occupations, communities, or exposures.</p>
<p>However, systems for detecting these signals remain underdeveloped. CTE illustrates this problem dramatically: it can currently be definitively diagnosed only after death, leading researchers to painstakingly build datasets, brain by donated brain. Other neurodegenerative diseases present different challenges, but the underlying need for better population-level information is similar.</p>
<p>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 advocate for families affected by FTD and for efforts to collect better information about it.</p>
<p>Heming Willis 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.</p>
<p>The significance of these efforts extends beyond one disease or one bill. Registries and data empower researchers to identify patterns that physicians, hospitals, and families would not otherwise see.</p>
<p>Individually, a diagnosis is a tragedy; collectively, from farmers to football players, diagnoses become a signal.</p>
<p>The original Ice Bucket Challenge put ALS on the pop-culture map. Willis’s diagnosis has brought unprecedented attention to FTD. Football’s reckoning with CTE is forcing Americans to confront brain health questions that were once largely confined to laboratories.</p>
<p>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.</p>
<p><em>Nora Kenney Mittiga is communications director at End Chronic Disease.</em></p>