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Bob Gibson, a retired Canadian military pilot diagnosed with ALS, on Parliament Hill, Oct. 26. Gibson is working with the ALS Society of Canada to try and secure $50-million in research funding from the federal government in Thursday’s budget.Dave Chan/The Globe and Mail
Bob Gibson flew all over the world during his 12 years as a pilot in the Royal Canadian Air Force, but when he travelled to Ottawa from Guelph, Ont., last week, he was on a different mission.
Mr. Gibson was diagnosed with Amyotrophic lateral sclerosis, or ALS, in December, 2023, years after he started to have trouble moving his right foot, an issue medical providers initially attributed to back issues. He has since learned about several studies from multiple countries that found veterans appear to be diagnosed with ALS at rates higher than the general population.
The reason for the association remains a mystery.
In a 2013 policy document, Veterans Affairs Canada noted while the cause of ALS is largely unknown in the majority of cases, some scientific theories exist about potential triggers, including, but not limited to, exposure to neurotoxic substances, viral infections, dietary deficiencies, heavy labour and physical trauma.
Mr. Gibson is working with the ALS Society of Canada to try and secure $50-million in research funding from the federal government in Thursday’s budget to better understand the disease, including its potential link to military service.
He said in an interview that Canada needs to support further research on ALS, similar to other countries. In February, the U.S. Congress approved new federal funding for ALS research totalling US$315-million. ALS Canada says Australia and Britain also recognize the need for research spending.
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Gibson, pictured here in service, is a retired member of the Royal Canadian Air Force. A study led by researchers at Harvard T.H. Chan School of Public Health found that those who served in the air force had a 29 per cent higher rate of ALS.Supplied
The advocacy organization says the federal government has never offered specific funding for ALS research in past budgets.
“We’ve got a good group of people here,” Mr. Gibson said, referring to Canadian researchers. “Use them and get going.”
Mr. Gibson, 69, knows future research efforts won’t change the fact that ALS, which affects muscles involved in key functions such as breathing, will eventually take his life.
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From top to bottom: Bob’s father (right) getting his wings pinned on. Bob getting his wings pinned on by his father. Bob pinning the wings on his son.Supplied
But the grandfather, known by his family for his stubborn streak, is determined to push ahead while he can.
After being diagnosed with ALS, Mr. Gibson said he had a choice to make: He could either feel bad about his situation or he could do whatever he could with his “last bit of time.”
Tammy Moore, chief executive officer of ALS Canada, is urging the government to fund research that could be used to evaluate the demographics of patients across the country and ensure they have access to clinical trials. Additionally, new funding would offer a chance to examine differences in outcomes, such as patients who live months compared with years.
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Ms. Moore added that Canadian research could help answer outstanding questions about findings that veterans seem more likely to develop ALS. “We need to understand why,” she said.
ALS Canada said the first major signal of a pattern between ALS diagnoses and military service was found in 2003. Researchers had examined approximately 2.5 million U.S. military personnel who served worldwide during the Gulf War. Veterans who had deployed to the region were found to have nearly twice the risk, 92 per cent higher, of developing ALS compared with those who had not.
This summer, a study led by researchers at Harvard T.H. Chan School of Public Health was published in Neurology, a peer-reviewed medical journal of the American Academy of Neurology. It looked at nearly 9.2 million male veterans who received care through the U.S. Veterans Health Administration from 2000 to 2024 and found ALS diagnosis rates varied based on which branch of the military a patient had served in, suggesting a potential link to environmental exposures.
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Bob Gibson and his wife Charmaine Gibson.Dave Chan/The Globe and Mail
Among the U.S. veterans, the study found 13,935 developed ALS. Compared with army veterans, those who served in the air force had a 29 per cent higher rate of the disease, coast guard veterans had a 26 per cent higher rate and navy veterans had a 15 per cent higher rate. Marine veterans had a 22 per cent lower rate, the study found.
“Officers and those serving in the Air Force, Navy, or Coast Guard may incur exposure to military environments that increase risk of ALS,” it said. “It is imperative to identify relevant exposures to reduce harm to service members and, potentially, civilians with similar exposures,” the study said.
Defence Minister David McGuinty has expressed concern about the potential link between disease and military service, and pledged last week that Ottawa would look into the matter in relation to ALS.
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Bob Gibson knows his life is nearing its end, but he is speaking up in hopes of helping other veterans.Supplied
In the House of Commons last week, Conservative MP Michael Barrett raised Mr. Gibson’s case and said he supports the ALS community’s call for $50-million in federal spending on research.
Amid their push for research funding, Mr. Gibson and his wife Charmaine Gibson worry the same diagnosis will land on their son, Kyle, a 39-year-old who spent 17 years as a pilot in the Air Force.
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Veterans deserve to know about the risk of developing the disease, Ms. Gibson said, adding it is not sufficient to compensate former service members who develop ALS. There must be answers, she said.
Before he learned his father had ALS, Kyle Gibson said that he never thought his time in the military could be linked to a heightened risk for the disease.
Kyle said it has been a shock to see how debilitating ALS is for his dad and the thought of developing the condition himself lives in the back of his mind.
He applauds his father for pushing the federal government to fund scientific research that could help other patients.
“I think it’s kind of shameful that he has to fight that hard for it, though.”