Beyond the #IceBucketChallenge: The ALS Canada and Brain Canada Partnership

Remember the Ice Bucket Challenge? The frisson of being challenged. The chill of water cascading down a body. The issuing of a summons to a friend or family. All for a noble cause: to promote aware­ness and raise funds for amyotrophic lateral sclerosis (ALS). Yet, what happened beyond the hashtag?

In December 2018, ALS Canada and Brain Canada announced $720,000 in funding for six trainee awards. These grants sustain high-quality Canadian ALS research by providing salary support for the next generation of ALS researchers. “This was a tremendous opportunity to collaborate with Brain Canada to support more trainees in a given year than ever before,” said Dr. David Taylor, VP Research, ALS Society of Canada. This completed the last of the $20-million research partnership with Brain Canada (through the Canada Brain Research Fund with financial support from the Government of Canada) follow­ing the Ice Bucket Challenge. A partnership that resulted in the largest one-time investment in research in the history of ALS Canada.

It brought researchers who were not working on the subject to ALS research in a multidisciplinary environ­ment conducive to breakthroughs. Seventeen million dollars was raised through the challenge in 2014. Increased awareness resulted in a $10-million matching grant for research by Brain Canada. ALS Canada dedicated the last of the matched Ice Bucket Challenge research funding to early-career researchers.

The historic partnership between ALS Canada and Brain Canada encompasses three jointly funded programs. The first is the Arthur J. Hudson Translational team grant, which brings together researchers from across the country to accelerate therapeutic development. The second is the Discovery grants program. It encourages basic research focused on identifying the causes of, or treatments for ALS and related neurological diseases. The third, the Career Transition Award program, aims to identify rising stars pursuing innovative research in labs and academic institutions in Canada. The award has a long-term goal of developing the next generation of scientists across disciplines within basic and clinical sciences, contributing to knowledge generation and translation in ALS.

For Dr. Sahara Khade­mullah, Brain Canada has been part of her success in studying the inhibitory system that is necessary for the brain to function normally, a crucial step in ALS research. When the signalling network func­tions properly, there is a good balance between chemicals that excite the neurons and chemicals that inhibit them. A feature of ALS before symptoms appear is that motor neu­rons in the brain become over-excited – hence the impact a better understanding of the inhibitory system can have.

Dr. Khademullah worked in the Lab of Dr. Melanie Woo­din at the University of Toronto as a PhD student. At the time, Dr. Woodin was funded by a Discovery grant. Now, as a postdoctoral fellow, Dr. Khademullah has received a $165,000 trainee award from the ALS Canada Research Program, in partnership with Brain Canada, and La Fondation Vincent Bourque. The award allows her to investigate how aberrant inhibitory transmission along the pathway connecting the motor cortex to the spinal cord leads to neurodegeneration in ALS.

“A lot of my passion and drive comes from the realization that people living with ALS have extremely limited options and are putting their faith in researchers and doctors to help them in their quest to end ALS,” says Dr. Khademul­lah. “Every day that I’m at work, my goal is to try to find answers that will help.”

Beyond the Ice Bucket Challenge, we have invested over $72 million in research to advance our understanding of neurodegenerative disorders, including ALS, Alzheimer’s, Multiple Sclerosis, Parkinson’s, and Huntington’s. As with the ripple effect created by the Ice Bucket Challenge, this is leading to breakthroughs that will have multiple impacts, even when the entry point is the study of one disorder.