“When you start researching ALS, it becomes a life mission,” says Dr. Janice Robertson, a prominent figure in the ALS research community in Canada and abroad. Dr. Robertson is studying variations within the brain and spinal cord of people living with ALS using two powerful new technologies that allow researchers to examine the nuclei of about six thousand single cells at a time.  The goal is to gain a better understanding of how ALS progresses in the search for new treatments and a cure.

Dr. Robertson’s early research focused on Alzheimer’s disease but coming into contact with people living with ALS changed the course of her professional life. “I was doing my PhD in London, England and the lab I was working in was next door to an ALS clinic,” she recalls. “I would see people coming to the ALS clinic, and then coming in with walking sticks and then wheelchairs and then they didn’t come in anymore. ALS can move so rapidly. It’s such a horrible disease.”

In 1997, Dr. Robertson accepted a fellowship working alongside two key ALS researchers in Montreal, Heather Durham and Jean-Pierre Julien. Her original plan was to stay in Canada for two years, but her research took off, and landed her at the Tanz Centre for Research in Neurodegenerative Diseases at the University of Toronto.

One of the attractions of working at the Centre was the number of researchers working on other adult-

Janice at 2019 ALS Research Forum
Dr. Robertson at the 2019 ALS Canada Research Forum.

onset neurodegenerative diseases like Alzheimer’s disease and Parkinson’s disease. “It was a good place for me to develop an ALS research program,” says Dr. Robertson, “because these diseases are all linked and we can learn from one another, sharing ideas and techniques, and informing each other about our research.” Another important factor was the strong degree of collaboration among ALS researchers nationally and internationally, and opportunities for scientists, health care professionals and people living with ALS to make meaningful connections including at the ALS Canada Research Forum, hosted by ALS Canada every year.

Engaging with patients at the ALS Canada Research Forum and through her lab-based work with the ALS Clinic in Toronto continues to be highly motivating for Dr. Robertson and her team. They have been building a successful ALS research program over the last 15 years, collecting complete clinical patient histories, blood for DNA samples, and even analyzing the brains and spinal cords of people who have donated their bodies to science. “You have no idea the sacrifice these people make — time is not on their side, yet they give countless hours to be involved in our research. They’re incredibly courageous,” she says

Thanks in part to the success of the 2014 ALS Ice Bucket Challenge and the $21.5 million invested in Canadian ALS research as a result, researchers like Dr. Robertson, are confident that earlier diagnosis, new treatments, and the possibility of halting or slowing the disease progression are closer than ever before.

“I’m doing research now I couldn’t have dreamed about a few years ago,” says Dr. Robertson. “New technologies – like the new MRI-guided focused ultrasound for delivering therapeutics to the brain and spinal cord – are so important for moving this field forward. But these new technologies are also expensive and if you don’t have the money, you can’t move forward.”

The case for insisting on sustained support for people living with ALS is compelling, no matter how you look at it. “For some individuals, from diagnosis of their very first symptom to death can be six months,” says Dr. Robertson. “Fifty per cent of people die within 18 months; 80 per cent of people die within two to five years.” It is difficult to argue that change cannot come soon enough.

“Without research, we won’t find a cure,” says Dr. Robertson. “I think there’s confidence that within the next several years something really impactful is going to happen. But whenever you say something like that to someone with a rapidly progressing disease, they say, ‘well that’s no good for me, because I won’t be alive to see it.’”

“And that’s why time is of the essence, it’s not only for the future, it’s for the people living now with this disease.”

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