Changing the future of ALS

Bridging the gap between families and the research community

Guy Aubert’s hope for the future was shaken to the core after he was diagnosed with ALS in March 2018. But the Victoriaville man’s hope was restored by Dr. Richard Robitaille and his ALS research team. He and his wife, along with their friends Max and Sylvie, spent the day with Dr. Robitaille at his lab, a unique experience that they’d bid on during he last online auction in support of ALS Quebec.

“Our team was honoured to have Mr. Aubert and his friends visit our lab. The goal of the exercise was, first and foremost, to bridge the divide between the research community and the families touched by ALS who, just like us, survive on hope. Meeting Mr. Aubert really changed our lives by opening up our eyes to his situation and reminded us of why we do what we do.”

-Dr. Richard Robitaille, full professor, Department of Neuroscience, Université de Montréal,
and member of ALS Quebec’s Board of Directors



2018 ALS research review

The ALS Society of Quebec is proud to have contributed over $155,000 to the ALS Canada Research Program, which aims to accelerate research impact by providing funding support for the best ALS projects focused on translating scientific discoveries into treatments for ALS.

In 2018, the ALS Research Program funded more than $1.7 million in Canadian ALS research to support the next generation of ALS researchers bring forward new and innovative discoveries and to help established researchers further advance our understanding of the disease – all to help create a future without ALS.

Included was a $1 million investment in eight new research projects that aim to enable the exploration of new therapeutic targets, extend existing research to support further discoveries and help researchers gain a greater understanding about why ALS progresses differently in each individual. An additional $720,000 in funding was also provided in partnership with Brain Canada for six new trainee awards to support the next generation of ALS researchers currently pursuing PhDs or postdoctoral research positions, with the aim of sustaining high-quality Canadian ALS research. The investment represents the last of the matched funds from Brain Canada following the Ice Bucket Challenge, as well as a new partnership with La Fondation Vincent Bourque, which we helped to establish shortly before Vincent passed away from ALS, to make one of the trainee awards possible as part of his legacy.

The granting of each award followed a competitive peer review process, which engaged global ALS experts who evaluated a larger pool of applications to identify the projects that are grounded in scientific excellence and have the potential to most quickly advance the field of ALS research in order to develop effective treatments.

Many international ALS researchers joined the 14th Annual Fondation André-Delambre Symposium at Quebec city’s Université Laval.

“The ALS Canada Research Program directs donor dollars towards the best ALS research projects in Canada and funds exceptional students and postdoctoral candidates with the goals of creating the next generation of dedicated ALS researchers in the country. The projects funded this year include great new ideas that need pilot funding to gather a foundation of data, ongoing ALS research that is already impacting the global understanding of ALS, and studies that directly
affect people living with ALS today. With Brain Canada’s commitment of matched funds following the Ice Bucket Challenge now complete, the ALS Canada Research Program will return to its historic funding levels. The generosity of donors and partnerships with provincial ALS Societies across Canada are essential in maintaining the momentum of the last five years and expand to fund even more projects in the future.”

-Dr. David Taylor, VP Research, ALS Canada

Can a revolutionary gene-edition tool create better animal models for studying ALS?

Amongst the researchers being funded is Dr. Gary Armstrong from the Montréal Neurological Institute, who was awarded a $125,000 project grant. With this grant, Dr. Armstrong will use a revolutionary gene-editing tool called CRISPR-Cas9 to create genetically modified zebrafish that more accurately represent the genetic situation in human ALS. Using specialized techniques to measure the health of motor neurons in these models, Dr. Armstrong hopes to gain new insights into the relationship between muscles and motor neurons in order to better understand how
ALS arises. If successful, his project will pave the way for using his innovative CRISPR-Cas9 tool to create accurate models of ALS in other animals in future research.


“Validating our innovative gene-editing tool to make zebrafish models of ALS may help other researchers develop better animal models of ALS, helping to advance promising therapies into clinical trials much faster than current timelines.”

-Dr. Gary Armstrong, Ph. D., neuroscientist and assistant professor at the Montreal Neurological Institute, McGill University




Does a previously unstudied protein play an important role in ALS?

The TDP-43 protein is usually found inside the cell nucleus and is responsible for regulating many cellular processes. In 97 percent of ALS cases and nearly half of frontotemporal dementia ones, scientists have discovered that the TDP-43 protein is misplaced to an area outside the cell nucleus called the cytoplasm.

Dr. Vande Velde recently discovered that reducing the amount of TDP-43 protein in the nucleus caused an ALS gene called hnRNPA1 to be abnormally read, thus creating a new protein that she labeled hnRNP A1B. Dr. Vande Velde suspects this new protein could be a previously undiscovered toxic form. In her work, she will examine how hnRNP A1B functions and whether it plays a role in known mechanisms of ALS pathology. She will conduct cell and mice experiments first and then validate her findings using ALS tissue samples generously donated to the Douglas-Bell Canada Brain Bank in Montréal and through other ALS labs.

“I hope that a better understanding of hnRNP A1B’s function in ALS will reveal it as a potential target for new therapies and biomarkers
in the future.”

Dr. Christine Vande Velde, Ph.D., associate professor, Department of Neuroscience, Université de Montréal and at the Université de Montréal CHUM Research Center




Thank you to all Canadian researchers for feeding hope a future without ALS!
To learn more about the ALS Canada Research program, please visit 


>> To read the rest of our 2018 Annual Report, please click here.