Sometime around 1999, doctors at a New Hampshire hospital noticed a pattern in their ALS patients–many of them lived near water. Since then, according to a Scientic American article, researchers at Dartmouth-Hitchcock Medical Center have identified several ALS hot spots in lake and coastal communities in New England, and they suspect that toxic blooms of blue-green algae–which are becoming more common worldwide–may play a role. Their preliminary data suggest that the disease, also known as Lou Gehrig’s disease, is about 2.5 times more prevalent among people who live within a half-mile of water bodies with past or current cyanobacteria colonies.

In 2022, an Arizona State University study found a “strong association” between BMAA, a toxin found in cyanobacteria, and ALS, while clusters of ALS have been reported near bloom outbreaks in France, Japan, New Hampshire, and Wisconsin.

In the past several months, two women I’m acquainted with, both whom live close to the lake and within a half mile of one another, have been diagnosed with ALS. I was also able to identify another person who lived by Lake Chautauqua, was very active on the water, and who passed away from ALS in 2019. Smaller case reports such as these may not possess statistical significance, but should not be ignored as they could provide clues to a potential environmental trigger.

In contrast, the New Hampshire study identified nine ALS patients who lived near Lake Mascoma in Enfield, NH, an incidence of sporadic ALS that is 10 to 25 times the expected incidence rate.

Scientists are investigating whether breathing a neurotoxin produced by the algae may raise the risk of the disease. They have a long way to go, however: While the toxin does seem to kill nerve cells, no research, even in animals, has confirmed the link to ALS.

Chautauqua County has a population of nearly 128,000 people. In 2015, the CDC reported that the annual incidence of ALS was about two per 100,000 people in the U.S, although rates may be increasing, according to researchers. Unfortunately, New York State – and most other states – does not track every instance of ALS that is diagnosed. But tracking is common practice for about 80 other diseases, from AIDS to the Zika virus. A state or county registry of diagnosed cases of ALS seems a prudent thing to do since research stands to gain a lot from tracking and studying the environments of afflicted individuals, as exemplified in the New Hampshire study.

In recent years, ALS research has shown a spotlight on blue-green algae, also known as cyanobacteria. “There’s a growing awareness of the importance of gene–environment interactions with neurodegenerative diseases. There is more interest in examining environmental exposures, including exposures to cyanobacteria, as possible risk factors for sporadic ALS,” said Paul Alan Cox, director of the nonprofit Institute of Ethnomedicine in Wyoming, which focuses on treatments for ALS and other neurodegenerative diseases.

Local organizations, such as the Chautauqua Lake Association, have been actively involved in monitoring and managing the algae blooms. They conduct regular water testing and implement strategies such as nutrient management and lake restoration projects to reduce the nutrient levels in the lake and mitigate the blooms’ impact.

It’s important to note that algae blooms are complex issues, and addressing them requires ongoing efforts and collaboration between various stakeholders, including government agencies, local communities, and environmental organizations.

Obviously, exposure to blue-green algae does not directly correlate to an ALS diagnosis. Scientists are trying to understand who is vulnerable to the disease and who isn’t. If blue-green algae is the gun, then what is the biological or genetic trigger?

In 2017 and 2019, and even last year, several beaches on Lake Chautauqua were closed because of algae blooms. A quick check last Monday on the NYS Government’s Harmful Algae Blooms Map showed small localized algae blooms reported at Long Point and across from Bemus Point.

There is no doubt the blooms are a continuous problem, but given the studies cited above, it may also be a good idea to monitor the health of our citizens as closely as we monitor the blooms.