Meet the junior researchers behind the 2022 ALS Canada – Brain Canada Trainee Awards
Amyotrophic lateral sclerosis (ALS) is a complex disease with varying symptoms and severity for people affected. Due to its heterogeneity, diagnosing the disease can be challenging and finding effective treatments can also be difficult.
CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS is a platform established in Canada to gather biological samples, data, and experiences of people with ALS and healthy volunteers from across the country.
Through a collective effort, researchers aim to better understand the genetic causes of ALS, identify biomarkers for early detection, and impact how clinicians can treat the disease.
Participating for future generations
Looking back, Kris Noakes can see how her genetic form of ALS has impacted her family through generations. Living with the disease has meant letting go of parts of her life, including her love for running and reimagining her career.
After Kris recovered from the initial shock of her diagnosis, she turned to her First Nations teachings for guidance. Embracing her feeling of responsibility for the community, she is determined to assist in research, advocacy, and support for people like herself living with ALS.
Kris journeys to Sunnybrook Hospital in Toronto four times a year, where the team looks at the progression of the disease, and she undergoes MRI scans, cognitive and speech testing, and has her blood collected.
“People aren’t necessarily thinking of this at the time of diagnosis,” Kris shares. “It’s half a day that can really have an impact on our lives. It’s a small sacrifice to help lead us to finding a cure for this devastating disease.”
Samples and data are de-identified and will be shared globally for researchers to use for scientific advancement. Kris believes the more her samples are used, the better. She likes the idea of her samples travelling around the world and going to the places she might not have the opportunity to see in her lifetime.
“People can study me any way they want. My life depends on it; how can I not participate? My children’s lives, my cousins. The clock is ticking,” she adds.
Importance of personal engagement
CAPTURE ALS prioritizes the voices of people affected by ALS, their families, friends, and communities. It has an active Participant Partner Advisory Council (PPAC) that advises on research priorities, participant recruitment, and engagement guidelines.
“By including the voices of people living with ALS, the research gains an elevated sense of purpose and urgency,” said Shelagh Genuis, a CAPTURE ALS member who works with the PPAC. “Research projects sometimes fall behind schedule, but for someone living with ALS, every day counts. With their presence on our council, researchers are reminded of the time-sensitive nature of their work and are motivated to prioritize the needs of people affected by the disease.”
Participant engagement has been a priority since the beginning of the initiative. Early consultation with focus groups of people living with ALS and family members informed and shaped the funding application, including study design and CAPTURE ALS’ data sharing plan. Today, their participation ensures that the lived experience is embedded in all the research the team engages in.
Healthy Canadians are also needed in research
The ALS Society of Canada (ALS Canada) is proud to support CAPTURE ALS, and our team is actively participating in it. Carolina Jung, research specialist at ALS Canada, recently participated in the study as a healthy control participant.
“Healthy controls are an important part of any research study,” Carolina shared. “For researchers to obtain reliable and impactful results, they need healthy volunteers to participate. It’s a small contribution of your time and effort that can ultimately have a huge impact on people living with ALS.”
Join CAPTURE ALS
The team at CAPTURE ALS is seeking people living with ALS, their families, and control participants who can travel to clinics located near Edmonton, Toronto, Montreal, or Quebec City. To learn more about getting involved, visit captureals.ca.
On World Science Day, the latest ALS Canada-Brain Canada research awards, with support from Fondation Vincent Bourque, highlight the importance of funding early-career researchers and clinicians
Toronto — In recognition of World Science Day, together with Brain Canada, the ALS Society of Canada (ALS Canada) is pleased to announce the 2023 ALS Canada-Brain Canada Clinical Research Fellowship and Trainee Award recipients. These early career grants are designed to support the training and research of clinicians in clinical care and PhD students and postdoctoral fellows engaged in research related to amyotrophic lateral sclerosis (ALS) across Canada.
With an estimated 3,000 Canadians living with ALS, investing in the next generation of researchers is critical to learning more about the disease, improving therapies, and eventually finding a cure.
“Our commitment to invest in clinicians and researchers early in their careers through the Clinical Research Fellowship and Trainee Award programs ensures that we have top medical and scientific talent working hard to find treatments for people living with ALS,” said Dr. David Taylor, Vice-President of Research and Strategic Partnerships, ALS Canada. “These are critical parts of our national Research Program that drive optimal care and discovery toward our vision of a future without ALS.”
“Investing in the future of ALS research means investing in the brilliant young minds who possess the insights needed to unravel the complexities of the disease,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “Through the Clinical Fellowship Award and the Trainee Award program, Brain Canada proudly supports these up-and-coming scientists, as they are shaping a more hopeful future for those battling ALS.”
The Clinical Research Fellowship is designed to support a clinician’s training in clinical care and research skills related to ALS, which is crucial to building better clinical infrastructure across Canada.
The Clinical Research Fellowship will provide $200,000 in funding.
Summary of 2023 Clinical Research Fellowship
- Can we better understand the experience of younger middle-aged adults with ALS to help guide age-appropriate management of the disease? Dr. Andrea Parks, co-supervised by Dr. Agessandro Abrahao, Dr. Lesley Gotlib Conn, Dr. Joanna Sale, and Dr. Lorne Zinman, Sunnybrook Health Sciences Centre, awarded $200,000
The Trainee Awards include two streams of funding: Doctoral students and postdoctoral fellows receive financial support to cover their salaries for up to three years, providing Canadian labs with the necessary funds to have top researchers working on the best projects to better understand the disease and drive toward new treatments for individuals living with ALS.
A total of $303,000 was awarded through the 2023 Trainee Awards.
Summary of 2023 Doctoral Awards
- Will this novel decision aid improve early care planning and symptom management in those experiencing bulbar ALS symptoms? Anna Huynh, a PhD student in Dr. Yana Yunusova’s lab at Sunnybrook Research Institute, awarded $50,000 over two years
- Do acute viral infections play a role in triggering onset or accelerating the progression of ALS?
Art Marzok, a PhD student in Dr. Matthew Miller’s lab at McMaster University, awarded $25,000 for one year - Can this sophisticated method to measure brain activity help researchers better understand the role of hyperexcitability in ALS and its connection to symptoms? Liane Phung, a PhD student co-supervised by Dr. Agessandro Abrahao and Dr. Lorne Zinman at Sunnybrook Research Institute, awarded $75,000 over three years
- Can a better understanding of how this particular protein influences overall protein production in cells offer insights into treating ALS? Amrita Verma, a PhD student in Dr. Neil Cashman’s lab at the University of British Columbia, awarded $75,000 over three years
Summary of 2023 Postdoctoral Fellowship
- Can a combination of advanced brain imaging and artificial intelligence uncover a biomarker to better track disease progression? Dr. Isabelle Lajoie, a postdoctoral fellow in Dr. Mahsa Dadar’s lab at the Douglas Hospital Research Centre, McGill University, awarded $78,000 over two years
World Science Day reminds us of the impact science has in all our lives. ALS Canada is proud to support emerging scientists and clinicians whose ideas and discoveries will advance treatment and eventually lead to a world free of ALS.
Funding for Anna Huynh’s Doctoral Award was made possible through partnership with Fondation Vincent Bourque, who generously contributed $25,000 to ALS Canada, which was matched by Brain Canada through the Canada Brain Research Fund (CBRF).
The CBRF is an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation, which increases Canadians’ support for brain research and expands the philanthropic space for funding brain research to achieve maximum impact. To date, Health Canada has invested more than $145 million in brain research through the CBRF which has been matched by Brain Canada Foundation and its donors and partners.
About ALS Canada and the ALS Canada Research Program
The ALS Society of Canada (ALS Canada) is working to change what it means to live with amyotrophic lateral sclerosis, an unrelenting and currently terminal disease.
Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable, and timely access to proven therapies.
Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change.
Through the ALS Canada Research Program, we fund peer-reviewed research grants, foster collaboration and build capacity within Canada’s ALS research and clinical community, and invest in new areas of research positioned to have high impact. As the only national dedicated source of funding for ALS research across Canada, the ALS Canada Research Program aims to accelerate research impact by providing funding for the most promising ALS projects focused on translating scientific discoveries into treatments for ALS. We are grateful for the support of our donors and the contributions from participating provincial ALS Societies through the Walk to End ALS.
About Brain Canada
Brain Canada is a national non-profit organization that enables and supports excellent, innovative, paradigm-changing brain research in Canada. It plays a unique and invaluable role as the national convener of the brain research community. We join people, labs and platforms across the country, as well as institutions, organizations and sectors – to drive innovation and foster an interconnected brain research system. Our work enables Canada to excel and make even greater contributions to the global quest to understand the brain and brain disorders. Join us in funding brilliance daily, braincanada.ca.
About Fondation Vincent Bourque
Vincent was diagnosed with ALS in 2015. He knew that ALS was not an incurable disease, but an underfunded one. With his wife, Isabelle Lessard, and many friends, he created a Fondation to help families living with ALS and to support research in order to eradicate ALS. He passed away in 2018, but his legacy to the ALS community is immeasurable. The Fondation Vincent Bourque has raised more than $1,200, 000 since 2018, given five research grants to star researchers dedicated to ALS, and distributed more than $250, 000 to help families. The Fondation Vincent Bourque is proud to be working with ALS Canada and Brain Canada toward a future without ALS.
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For more information
ALS Society of Canada
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437-703-5402
Brain Canada
Brielle Goulart
brielle.goulart@braincanada.ca
450-915-2253
Dr. Hussein Ghazale is the recipient of a $165,000 ALS Canada – Brain Canada 2022 Trainee Award.
After finishing his PhD in France, Dr. Ghazale moved to Canada to work with Dr. Carol Schuurmans at Sunnybrook Research Institute. Her team examines if neuronal reprogramming could serve as a potential treatment strategy for neurodegenerative diseases, including ALS.
ALS causes damage to neurons, affecting the body’s everyday ability to function. Dr. Ghazale’s work focuses on attempting to reprogram glial cells – a common and abundant type of brain cell – into new neurons. The team hopes these fresh cells could effectively integrate with existing cells in brains of people with ALS, improving their capacity and quality of life.
At the moment, Dr. Ghazale is testing the strategy in animal models. But with this influx of funding, he notes he can speed up his project timeline and do higher-tech experiments. The award will also help him refine his strategy to potentially translate this work to clinical applications.
“I know that this work could one day end up supporting people living with ALS and their families and help … ease what they’re going through,” he says. “This is what motivates me every day to keep working hard to improve therapeutic strategies.”
“We must continue to push the boundaries of ALS research,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “It’s through these uncharted territories that we will uncover the solutions and enable ourselves to envision a future where ALS no longer exists.”
Funding for the 2022 Postdoctoral Fellowship was made possible by Fondation Vincent Bourque, who generously contributed $82,500 to ALS Canada, which was matched by Brain Canada through the Canada Brain Research Fund (CBRF).
The CBRF is an innovative arrangement between the Government of Canada (through Health Canada) and Brain Canada Foundation, which increases Canadians’ support for brain research and expands the philanthropic space for funding brain research to achieve maximum impact. To date, Health Canada has invested more than $145 million in brain research through the CBRF which has been matched by Brain Canada Foundation and its donors and partners.
For a full project description, visit our “Projects Funded 2022” webpage.
The ALS Canada-Brain Canada Trainee Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the students who received the 2022 ALS Canada – Brain Canada Doctoral Awards
PhD student Lucia Meng Qi Jadon (previously Liao) is the recipient of a $75,000 ALS Canada – Brain Canada 2022 Trainee Award. She will use the funding to investigate whether a newly discovered tag on TDP-43 might have an important role to play in ALS.
For her first six months of doctoral work in Dr. Dale Martin’s lab at the University of Waterloo, Lucia struggled. “I was trying to show something that hadn’t been shown before, so it was difficult,” she said.
But then – success. She detected a faint signal that confirmed she was on the right path. Thanks to her persistence, her work is opening up a new pathway for research.
In a way, the award was like that first signal, confirming her work as a researcher. “I put in all this work, and this award helps me know I’m good enough to be here,” she said. “It’s a huge encouragement that I am cut out for this.”
Lucia’s desire to understand the intricate, complex processes of human cells drives her passion for research.
“When you discover one process, it immediately opens up new possibilities. It’s like a puzzle you keep finding more pieces to,” she says.
Lucia’s project looks at one piece of the complicated ALS puzzle. Early in her PhD work, she confirmed that TDP-43 undergoes a modification called palmitoylation. This process may play a role in TDP-43 mislocation, one of the most common hallmarks of ALS.
She will use this funding to better define the properties of palmitoylation of TDP-43 and understand how it might be abnormal in ALS.
“I’m peeling back the layers, little by little,” she says.
“Ms. Jadon’s work will serve as a beacon, drawing the attention of like-minded scientists eager to explore new frontiers in ALS research,” says Dr. Viviane Poupon, President and CEO of Brain Canada.
Lucia says looks forward to sharing her findings to spark new collaborations within the ALS research community. “I want to establish the basics of this information I discovered and get this out there,” she said. “Then other researchers will know this is something they may want to look into.”
For a full project description, visit our “Projects Funded 2022” webpage.
The ALS Canada-Brain Canada Trainee Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the students behind the 2022 ALS Canada – Brain Canada Trainee Awards
Charlotte Manser is the recipient of a $75,000 ALS Canada – Brain Canada 2022 Trainee Award. As a PhD student at the University of Ottawa, she investigates how ALS-linked genes might contribute to the loss of normal stress granule formation.
When our cells are stressed, they create “stress granules” to protect RNA, which are critical substances to cellular health. Charlotte explores how the abnormal accumulation of stress granules might contribute to the mislocation of the protein TDP-43, a common hallmark of ALS.
She has tested many genes that might be linked with both stress granule formation and ALS.
“I found two hits that I’m actively pursuing,” she says. “With these, we can try to uncover new mechanisms of disease or a new therapeutic target. They can help us better understand how the disease comes about.”
Determination motivated by loss
Charlotte’s work is motivated by her personal connection to the disease.
In 2013, her father died from ALS. Around that time, she switched her undergraduate major from forensics to neuroscience.
“It was a light bulb moment,” she says. “I knew this is what I wanted to do.”
She also became an active member of the community of families affected by ALS. Charlotte notes that it means a lot for this same community to recognize her work with this award.
“This work represents the hope of turning something awful, like grief, into something productive and positive,” she says. “My hope is that I can contribute something to the field so that it isn’t so bad for the next person.”
For a full project description, visit our “Projects Funded 2022” webpage.
The ALS Canada-Brain Canada Trainee Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the junior researchers who received the 2022 ALS Canada – Brain Canada Trainee Awards
Donovan McDonald is the recipient of a $75,000 ALS Canada – Brain Canada 2022 Trainee Award. As a PhD student, he investigates how the function of tRNA could contribute to ALS disease processes.
Donovan came to Canada from the Bahamas. “People don’t always recognize the challenges that international students face,” he says. Funding opportunities, for example, can be far more limited.
Award programs like those provided by ALS Canada and Brain Canada help fill a critical funding gap for promising students like Donovan.
“Supporting international students in brain research is vital for fostering diverse perspectives, advancing global scientific collaboration, and accelerating breakthroughs in understanding the complexities of the brain,” says Dr. Viviane Poupon, President and CEO of Brain Canada.
“It’s not just about the money,” Donovan says. “It’s also having your research recognized. This is crucial to your development as a scientist.”
Donovan’s original project sought to understand basic biological processes around tRNA. This critical molecule acts as a master key within cells to help proteins form. But working alongside prominent ALS researchers at Western University, he realized how relevant his work could be to exploring “uncharted territory” in ALS research.
In particular, Donovan is exploring how tRNA dysfunction might contribute to ALS in relation to a protein called angiogenin. Researchers have linked mutations in angiogenin, which helps regulate tRNA, to genetic cases of ALS.
“Despite being known for a long time, very few studies look at angiogenin and its role in ALS. That’s where I come in,” Donovan says.
The young researcher hopes his work helps others recognize to the idea that tRNAs are important molecules to study in ALS.
“I want to unravel how tRNA dysfunction can help point to either development of or predisposition to ALS,” he says. The ALS Canada – Brain Canada Trainee Award will help him do just that.
For a full project description, visit our “Projects Funded 2022” webpage.
The ALS Canada-Brain Canada Trainee Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet Dr. Philip McGoldrick, recipient of the 2022 ALS Canada – Brain Canada Career Transition Award
Dr. Philip McGoldrick, a researcher at the Tanz Centre for Research in Neurodegenerative Diseases at the University of Toronto, is the 2022 recipient of a $250,000 ALS Canada – Brain Canada Career Transition Award.
This award helps launch talented early-career researchers, allowing them to set up their own labs, giving them the independence to establish their own research programs.
“This award enables me to continue something I’ve been passionately working on for several years,” he says. “The work I am doing is so exciting. It would have been a huge loss to not be able to continue it.”
Dr. McGoldrick was inspired to study neurodegenerative disease at a young age after seeing how these types of diseases affected family members. After moving to London (UK) for a PhD, ALS soon caught his interest.
“It was the most interesting one of the diseases being studied,” he says. He’s been working in ALS since 2008.
Dr. McGoldrick studies mutations in the C9ORF72 gene – the most common genetic cause of ALS. His current projects explore how the loss of function that occurs when C9ORF72 is mutated can affect a crucial biological process called nucleocytoplasmic transport. He and his co-researchers recently published an article on the topic in Cell Reports. He is also interested in how these insights could be helpful in understanding sporadic cases of ALS.
“This support will allow me to investigate a fundamental but understudied mechanism that may contribute to ALS,” he says. “My hope is that I can be part of a sustained effort on multiple fronts to understand a genetic cause of ALS, but also apply these findings to understand sporadic disease too.”
“This transformative program and collaboration with ALS Canada has the potential to inspire early-career researchers to explore innovative approaches, which could lead to a future without ALS,” says Dr. Viviane Poupon, President and CEO of Brain Canada.
The ALS Canada-Brain Canada Trainee Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
Could protecting the axon represent a promising treatment strategy for ALS?
Award: $300,000
Collaborators: Dr. Gary Armstrong, McGill University
Dr. Alex Parker, at the Centre de recherche du CHUM, Université de Montreal, is one of the first two recipients of the newly introduced three-year, $300,000 ALS Canada-Brain Canada Discovery Grant. Dr. Parker’s grant was funded in generous partnership with Dr. Jean-Pierre Canuel Fund – SLA Québec.
Dr. Parker’s project looks at possible targets for slowing neuronal degeneration in small worms used to model ALS, called C. elegans, which he has worked with since his days as a doctoral student at the University of British Columbia. He has been fascinated by neurodegeneration even as an early career researcher.
“I liked the idea of trying to model neurodegeneration in a simple system,” he says. “You can go fast and find things.”
He started his work looking at Huntington’s Disease before switching to ALS – a challenging disease that motivates him to work on problems not everyone wants to tackle.
“ALS is not like other diseases. It’s a hard problem – the disease window is short and aggressive,” says Dr. Parker. “For many people, it seems intractable. But we’re keeping at it – and I think we can make a contribution.”
For decades, researchers have used worm models to understand which genes help regrow neuronal axons after they are damaged. To date, these genes have not been studied for their role in the damage done by ALS.
Dr. Parker began this project by cataloging more than 100 of these genes – which either promote axonal regrowth or slow further damage – as potential targets for study in ALS models.
“We tested them all. And lo and behold, some of them actually stopped further neurodegeneration in an ALS model,” he says.
He then tested his “short list” on older worms that better simulate the cellular environment of ALS patients, who tend to be diagnosed in midlife or later. The result was two “extremely potent targets for slowing neurodegeneration,” he notes.
“We’re taking biology that’s known and rephrasing it for ALS,” Dr. Parker explains. The hope is to find drugs that can target these genetic pathways that reignite a cell’s ability to regenerate its own axons, effectively slowing disease progression.
He said the upgraded funding opportunity helped him think more ambitiously about the project and bring in collaborators that could accelerate the research.
Dr. Parker is working with Dr. Gary Armstrong at McGill University, an expert on zebrafish models. With the larger funding amount, Dr. Parker can move his hypothesis through different levels of validation, including zebrafish and iPSCs (human cell models), which could allow him to advance his findings to clinical trial on a much shorter timeline.
“The structure of the grant opened up the possibility of pushing this further and faster,” he says. “We’re already moving towards validation, and we just started.”
“This type of program is so important,” he adds. “It funds projects at the early stages, when it’s more challenging to get funding. This ALS Canada-Brain Canada Discovery Grant gave us the chance to really get our research going.”
“Supporting research at its earliest stages leads to transformative breakthroughs that have a lasting impact on human health and well-being,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “By funding early-stage research, we can address critical gaps in knowledge, focus on emerging challenges, and encourage researchers to explore unconventional approaches.”
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
Could improving the mechanisms of toxic protein disposal in motor neurons become a future treatment strategy?
Award: $125,000
Collaborators: Dr. Martin Duennwald, Western University, and Dr. Elizabeth Meiering, University of Waterloo
Dr. Gary Shaw is a biochemist at Western University and one of the nine ALS Canada-Brain Canada Discovery Grant recipients for 2022.
“It’s always really exciting when you get a research grant, because you’re using your ideas that you’ve researched in the literature and created new experiments around,” he says. “After all that, it’s exciting to have other scientists review it and appreciate your ideas.”
This project represents his first grant for ALS research, but it builds on his decades of work studying the proteins involved in neurodegeneration, particularly in Parkinson’s disease.
“It’s a bit of a new direction for my lab, but it seems like a logical progression” says Dr. Shaw.
“At Brain Canada, we adopt the One Brain approach to research, knowing that every discovery has the potential to have an impact across a spectrum of brain diseases and disorders,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “Dr. Shaw’s work in both Parkinson’s disease and now ALS will improve our understanding of the complexity of the brain as a whole.”
Tagging proteins to “take out the trash”
When our cells age, our body has a mechanism to “tag” unwanted or problematic proteins so they can be removed. Unfortunately, the enzyme machinery for this process often does not work properly in ALS and other neurodegenerative diseases.
Dr. Shaw’s project seeks to identify which proteins might be responsible for tagging the unwanted or misfolded proteins for removal from cells in common types of ALS.
“And if what we can do is identify proteins that we think are regulating these processes,” he explains, “those enzymes could be potential targets for small molecule therapeutics.”
His transition from other neurodegenerative diseases to ALS research is aided by his collaborators, including long-time ALS researchers Dr. Martin Duennwald, also at Western University, and Dr. Elizabeth Meiering at the University of Waterloo.
Though Dr. Shaw studies the most intricate of biochemical processes, he says he is inspired by the possibility that his research could make a difference for people living with ALS.
“I’ve always wanted to do research that is going to make a tangible difference, that has the potential to better people’s lives and health,” he says.
“In the long run, we are attempting to identify the root cause of diseases like ALS. These types of experiments are really important in doing that,” he adds. “This project does have the potential, I think, to impact people’s lives.”
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
Will this new way of looking at certain protective proteins better explain their role in ALS?
Award: $125,000
Collaborator: Dr. Heather D. Durham, McGill University
As one of the 2022 ALS Canada-Brain Canada Discovery Grant awardees, she gets to take her expertise and apply it to a new field: ALS research.
“I don’t usually do biomedical research – I usually do fundamental biology,” she says. “This project is really exciting because it allows my research to be more meaningful.”
Her winning 2022 proposal focuses on something Dr. Vera Ugalde has studied since her earliest work as a researcher: heat shock proteins (HSPs).
When a protein misfolds in our cells, they no longer do their jobs properly or may become toxic. Fortunately, our bodies don’t leave us hanging: they deploy HSPs, our cellular “paramedics,” to come refold the misshapen protein and help get the cell running again. This process supports protein homeostasis, critical for the balanced, healthy functioning of our cells.
Unfortunately? One type of cell is particularly bad at inducing HSPs in times of stress, even in healthy people: motor neurons.
By the same token, drugs that boost the role of HSPs in repairing damaged cells in other parts of the body don’t seem to work as well in motor neurons – the site of misfolded proteins in people living with ALS.
With the help of her 2022 Discovery Grant, Dr. Vera Ugalde will look closely at why motor neurons are so bad at making HSPs, exploring an entirely new mechanism that could explain the problem.
“Dr. Vera Ugalde’s research could pave the way for groundbreaking discoveries in motor neuron research,” says Dr. Viviane Poupon, President and CEO of Brain Canada.
Her hope is that by finding out the exact reason HSPs work poorly in motor neurons – and why current drugs don’t seem to help – she can help open a new pathway for future therapeutics.
“We have to do this”
The project started when Dr. Vera Ugalde began speaking with her McGill colleague, long-time ALS researcher Dr. Heather Durham, who is also an expert on HSPs.
The two realized quickly that Dr. Vera Ugalde’s technical expertise on protein homeostasis complemented Dr. Durham’s deep understanding of the pathways leading to cellular damage in ALS.
“When we started talking, we said, ‘we have to do this,’” Dr. Vera Ugalde says. “It’s a good synergy.”
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
What role does its sister protein play when restoring G3BP1 levels as a potential ALS treatment strategy?
Award: $125,000
Collaborators: Dr. Marlene Oeffinger, Institut de recherches cliniques de Montréal (IRCM)
Dr. Christine Vande Velde is a cellular biologist at the Centre de recherche du CHUM, Université de Montreal, and one of nine ALS Canada-Brain Canada Discovery Grant recipients for 2022. While she and her team spend their lab hours parsing out biological intricacies, her work is always motivated by something bigger: the lives of people affected by ALS.
Dr. Vande Velde just finished her six-year term on the ALS Society of Canada’s Board of Directors, which has given her face-to-face experiences with people living with ALS and their families.
“It’s been a fabulous experience that changed the way I think about what ALS Canada does. It has helped me always keep the mission front of mind,” she says.
For more than a decade, Dr. Vande Velde’s lab has been part of driving ALS research forward in Canada.
With this award, the research team will seek to understand the function of two “twin” proteins called G3BP1 and G3BP2. The proposal emerged from conversations between two trainees in her lab, a promising sign for the future of Canadian ALS research.
Conventional knowledge would say the two proteins are so similar, they’re identical. But other researchers have shown the prevailing narrative may be wrong, as previous studies reveal that when G3BP1 levels are reduced, G3BP2 cannot fully compensate for the loss.
G3BP1 tends to degrade when a protein called TDP-43 leaves its home in the nucleus – one of the most common hallmarks of ALS and other neurodegenerative diseases. Its twin, G3BP2, does not.
Dr. Vande Velde’s project asks a number of questions about what G3BP1 might do that its sibling can’t, if restoring G3BP1 function might be a therapeutic target for ALS, and more.
“In research, we can’t rely on overgeneralizations (like assuming two “twin” genes have the same function),” she says. “I’m excited to go deep into the biology to understand the nuances. In treatment, the details matter.”
“Regardless of the results, we will learn something about a target we think is druggable and relevant to the disease that we didn’t know before,” she says.
“Dr. Vande Velde is playing a pivotal role in shaping the future of ALS research in Canada. Her ability to think outside of the box makes her a valuable asset in the quest for innovative solutions and advancements,” says Dr. Viviane Poupon, President and CEO of Brain Canada.
“The more we understand the biology, the better we can interpret the results of any clinical trial,” says Dr. David Taylor, Vice-President, Research and Strategic Partnerships, ALS Canada. This is particularly important, as the research will help inform therapeutic strategies that Dr. Vande Velde is also working on in her lab.
At the end of the day, Dr. Vande Velde says she’s grateful to be part of such a robust research community – one that in recent years is producing real therapeutic results for patients.
“I don’t know anybody who works in ALS who’s not dedicated to the cause. Nobody does it as a hobby,” she says.
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
Can this routine and inexpensive procedure have a neuroprotective effect in ALS?
Award: $125,000
Collaborators: Dr. Minh Dang Nguyen, University of Calgary, and Dr. Deepak Kaushik, Memorial University of Newfoundland
Dr. Carlos Rodrigo Camara-Lemarroy is an early-career researcher and clinical neurologist based in Canada at the University of Calgary. He is a first-time recipient of an 2022 ALS Canada-Brain Canada Discovery Grant.
In his clinical practice, Dr. Camara-Lemarroy has worked extensively with people experiencing neurodegenerative diseases – from multiple sclerosis (MS) to Parkinson’s disease and ALS.
“As a clinician, it has struck me that despite how much we know about the brain, we have so few therapies for patients,” he says. “Their stories just stick in my soul.”
Motivated by his many patients, Dr. Camara-Lemarroy’s primary research interest is to rapidly translate basic neuroscience research into novel therapies for neurodegenerative disorders. So far, his focus has been on MS. But he realized that many of the diseases he treats as a clinician have similar signatures.
“At the end of the day, across these diseases, brain cells are dying,” he says. “We need to find a way to stop that.”
One of his current research questions surrounds ischemic preconditioning, i.e., the practice of briefly cutting off blood supply to prepare the body to better withstand disease.
In recent years, researchers have found that when they briefly cut off a patient’s blood flow (ischemia) with something as simple as a blood pressure cuff, the body will start to develop natural protective mechanisms, effectively conditioning itself to withstand greater injury.
Dr. Camara-Lemarroy and his team are asking whether ischemic preconditioning could help people with neurodegeneration better ward off the effects of their disease, effectively slowing progression.
Through his 2022 ALS Canada-Brain Canada Discovery Grant, Dr. Camara-Lemarroy is applying this concept in an ALS mouse model to see if there is any effect. Success in animal models could pave the way for the therapy to progress to clinical trials, and if ultimately found to be beneficial, it could lead to an accessible, inexpensive, and non-invasive treatment option.
He’s also leading a clinical trial using a similar concept in MS patients with funding from MS Canada.
“Dr. Camara-Lemarroy’s positive impact on MS research exemplifies the effectiveness of Brain Canada’s One Brain approach,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “This approach recognizes that every discovery has the potential to have an impact on a spectrum of brain diseases and disorders, as well as on our understanding of brain functioning.”
Both projects embody Dr. Camara-Lemarroy’s unique approach to therapeutic discovery.
“I’m trying to find therapies that don’t cost too much, are safe, that anyone can access, and that no one can put a patent on. We need therapies that can work for patients not just in the U.S. and Canada, but around the world. That’s the lens I use when designing studies,” he says.
In addition to working with Dr. Minh Dang Nguyen, also at the University of Calgary, Dr. Camara-Lemarroy is collaborating with Dr. Deepak Kaushik at Memorial University in Newfoundland, making it a cross-Canada collaboration.
“This research is truly novel,” says David Taylor, Vice-President, Research and Strategic Partnerships, ALS Canada. “And Discovery Grants are meant to fund novel ideas. It’s innovative ideas like Dr. Camara-Lemarroy’s that can open up new paths for discovery in ALS research.”
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
Can computational methods aid in the design of key antibodies for the diagnosis and treatment of ALS?
Award: $125,000
Dr. Maria Stepanova, a physicist at the University of Alberta, is one of nine 2022 ALS Canada-Brain Canada Discovery Grant recipients. She works closely with Dr. Holger Wille, a structural biologist also at U of A. Though both have decades of experience researching other neurodegenerative diseases, the grant represents their first time being funded for ALS research.
“We are new to the ALS field, so it’s nice to get funded for some of our ideas and see what we can contribute,” says Dr. Wille.
As early as junior high, Dr. Stepanova had a passion for scientific inquiry, hoping to become either a physicist or a biologist. She began her career as the former, studying how complex structures, such as crystals, could arise from seemingly simple interactions between atoms.
“I chose physics at the beginning because it allowed me to start with the very basics,” she says.
Her relentless scientific curiosity has, in time, led her back to biology, where she takes a theoretical approach to understand how complex biological structures arise.
This experience underpins her 2022 Discovery Grant project.
A project with potential for ALS treatments
A common hallmark of ALS is the presence of proteins, such as FUS or TDP-43, that have left their proper home in a cell, become misshapen and possibly no longer function properly. Drs. Stepanova and Wille’s project is based on what’s called the Prion Hypothesis, the idea that these misfolded proteins can transmit their abnormal structure to normal versions of the same protein, creating clumps or aggregates that spread throughout the nervous system.
Dr. Stepanova’s lab will use computational methods to analyze these aggregates in ALS-specific proteins. In doing so, she hopes to find areas of the complex shapes for which an antibody could be made.
Dr. Wille’s team will then take her data to attempt to create antibodies that could bind to and, theoretically, stop the misshapen proteins from spreading their abnormal shape.
This process – analyzing misfolded proteins and creating disease-specific antibodies – is one the collaborators have used before in work on other neurodegenerative diseases, such as Alzheimer’s or Parkinson’s. It’s the first time they will take this approach to ALS.
If successful, the project could be the first step in validating new ALS treatment sites or new biomarkers.
Working with Dr. Wille has allowed Dr. Stepanova to bring her theoretical expertise to experiments with possible clinical impact.
“Dr. Stepanova and I have collaborated for a long time on the theoretical side,” Dr. Wille says. “My team and I are the ones who try to translate things into practical experiments.”
By bringing together their complementary skills, the pair look forward to contributing new knowledge to the field of ALS research.
“This is truly what’s important to us,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “Collaboration and knowledge sharing to advance brain research and magnify the potential for impact.”
“Our goal is to find insights that would be interesting, enriching, and useful for the community on the way toward the development of new treatments of ALS,” Dr. Stepanova says. “And we will do our best to achieve whatever we can in two years.”
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS.
Interested in supporting projects like these?
Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
Could this new 3D cell culture model help researchers better predict disease progression in ALS?
Award: $125,000
Collaborators: Dr. Yasser Iturria-Medina, McGill University
When Dr. Thomas Durcan, director of The Neuro’s Early Drug Discovery Unit (EDDU), found out his team had been awarded a 2022 Discovery Grant, “It was a very happy day for us all.”
“All” includes his EDDU research associate, Dr. Mathilde Chaineau, and PhD student María José Castellanos Montiel, two of the key players on the winning proposal.
Dr. Durcan’s project uses an innovative model ten years in the making, thanks in large part to researchers at The Neuro (Montreal Neurological Institute-Hospital).
The model uses donor human blood cells that have been transformed into neurons, astrocytes, and microglia – all important cell types in the brain – to create 3D structures called spheroids. By better representing the multidimensional nature of the brain, the spheroids will help scientists discover new interactions and processes that may be happening in a diseased brain.
For the ALS Canada–Brain Canada Discovery Grant project, the team will use blood samples from people living with ALS to create spheroids that will offer new insights into how microglia and astrocytes interact together with neurons in a 3D ALS disease environment. They will then work with Dr. Yasser Iturria-Medina, a computational biologist at McGill University, to analyze what’s happening on the molecular level to generate new insights.
“Through this multimodal approach, we can hopefully find disease signatures that we would miss by just looking at the data in a simpler way,” says Dr. Durcan.
“From a scientific perspective, it’s very exciting for us to get these funds and to see this great project moving forward,” Ms. Montiel adds. “We’re going to build a model to study things that are not very well understood – we’re going to find out something new.”
“This is a very exciting collaboration,” says Dr. Viviane Poupon, President and CEO of Brain Canada. “Dr. Durcan and his team’s innovative approach towards data analysis has the potential to revolutionize the ALS research landscape in Canada.”
Keeping patients at the heart of the work
This research project relies on the generosity of people to donate their blood samples, something all three team members expressed gratitude for.
“Patients are going through a very hard time with their family, but they still find time to consent to give us their samples,” Dr. Chaineau says. “Research is always teamwork, and I include the patients as part of that team.”
When we spoke to the researchers, all three had just attended the 2023 ALS Canada Research Forum, which brings people living with ALS, clinicians, families, and scientists together. It is an excellent opportunity for researchers to put faces to the research projects they dedicate their time to.
At this year’s event, the sense of hope was palpable, the team says.
“The patients being so positive pushed us in the right direction,” says Dr. Chaineau. “Every time we go to an ALS Canada Research Forum, we come back ready to go.”’
“There are people that rely on us to get up every day early in the morning and work and do what we do,” adds Dr. Durcan. “I think that’s what really keeps us motivated.”
Ms. Montiel agrees. “As scientists, it’s nice to know who we’re helping and that we’re giving back to the community.”
Meet the researchers behind the winning 2022 Discovery Grant projects
Could this new mouse model help to understand the potential role of retroviruses in ALS and lead to new treatments?
Award: $125,000
Collaborators: Dr. Jody Haigh, University of Manitoba, and Dr. Domenico Di Curzio, St. Boniface Hospital Albrechtsen Research Centre
When Dr. Renée Douville found out she had been awarded one of the 2022 ALS Canada–Brain Canada Discovery Grants, she was excited. Very excited.
“I screamed so loud, people down the hallway heard me,” she said.
Dr. Douville, a virologist at St. Boniface Hospital Research Centre and the University of Winnipeg, is one of nine grant recipients for 2022. The funding will help her build on nearly 15 years of research that has made her an expert in a niche area of ALS research: the role of endogenous retroviruses (ERVs).
She was awarded alongside her long-time collaborator, Dr. Domenico Di Curzio at St. Boniface Hospital Research Centre, as well as Dr. Jody Haigh at the University of Manitoba.
“It’s particularly exciting because we’ve been working on this project together for a long time, slowly but surely,” she said.
“Brain Canada is proud to support researchers who have demonstrated successful collaboration over many years, emphasizing the importance of teamwork and collaboration in advancing scientific knowledge,” adds Dr. Viviane Poupon, President and CEO of Brain Canada.
Unlike typical viruses, humans are born with dormant ERVs already in their DNA. Dr. Douville and others have shown that some people with ALS display elevated levels of a specific ERV protein, called ERVK, which led to the hypothesis that ERVs, if reactivated, can damage motor neurons.
Dr. Douville has already tested the effect of overexpressed ERVK in cell and fruit fly models. The results? Neuronal damage, similar to what we see in people living with ALS.
The ALS Canada-Brain Canada Discovery Grant will now help her and her collaborators understand the effect of elevated ERVK levels in a mouse model. If the team can further validate that elevated ERVK levels lead to ALS-like symptoms, it could open up new targets for treatment.
The work dovetails with Lighthouse 2, a clinical trial happening in Europe, Australia and New Zealand to see whether targeting retroviruses can benefit people living with ALS. The trial is unique because it is testing a drug already approved to treat people with HIV that has previously been shown to be safe in people living with ALS.
Dr. Douville had started her career at Johns Hopkins looking at ERVs in multiple sclerosis, but she soon realized they had a much stronger signature in ALS. She hasn’t looked back.
“Everything started through scientific curiosity,” she said. “But today, my work with ALS has really changed how I think about endogenous retroviruses. My focus is now more on therapeutics, and how we could treat the damage ERVs do to our bodies…. I’m actually really hopeful that our research will potentially lead to new treatments for patients.”
In addition to excitement, she said the other emotion she feels is gratitude.
“I’m just extremely thankful for all the fundraising that people with ALS and their families do to raise money for our research,” she said. “And I’m thankful to ALS Canada and Brain Canada for taking a chance on us, even though our research area might be further afield.”
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS. Interested in supporting projects like these? Donate now and make a difference today.
Meet the researchers behind the winning 2022 Discovery Grant projects
Could the study of neuromuscular junction proteins aid in the development of essential biomarkers?
Award: $300,000
Collaborators: Dr. Danielle Arbour and Dr. Roberta Piovesana at the Université de Montréal, and Dr. Robert Bowser, Barrow Neurological Institute
Dr. Richard Robitaille, at the Université de Montréal, received his first grant from ALS Canada ten years ago. Already a world-leading expert on the neuromuscular junction (NMJ), the funding was his first research foray into ALS and allowed him to find clinical applications for his expertise. His lab now spends nearly all their research efforts on the disease.
Dr. Robitaille’s work demonstrates how powerful Discovery Grants can be for moving ALS research forward.
This year, he received one of the first ever three-year, $300,000 versions of the Discovery Grants. The money will fund a project related to an upcoming clinical trial built upon the foundational research funded by his first Discovery Grant a decade ago.
“Both Brain Canada and ALS Canada are dedicated to supporting research across all phases of a scientific journey,” says Dr. Viviane Poupon, President and CEO of Brain Canada.
The team will use this year’s grant to advance efforts to validate a set of candidate proteins linked to the NMJ as potential biomarkers for ALS treatment and disease progression. Biomarkers are objective measures to track the presence and effect of a disease in the body.
While many neurodegenerative diseases affect the places where neurons connect with other neurons, ALS also impacts the synaptic connection between a nerve and muscle cells – the NMJ.
If successful, using NMJ-linked proteins as biomarkers would have many advantages: changes to the NMJ appear early in the disease, potentially leading to earlier diagnosis and intervention. All forms of ALS lead to changes at the NMJ, making it a possible universal biomarker for the disease. Finally, changes in the NMJ can be tracked using blood samples – something much less invasive for people than a lumbar puncture or tissue sample.
“ALS has a big need for biomarkers, and these are very original. There’s nothing like this that’s been explored in ALS,” says Dr. Robitaille.
In addition, Dr. Robitaille will explore whether the NMJ could also be a target for treatment.
“It’s really exciting to use our basic research to target something with clinical use,” he says.
Dr. Robitaille is working with Dr. Robert Bowser at the Barrow Neurological Institute in Arizona, an international leader in finding biomarkers for ALS.
Beyond the scientific side of his work, Dr. Robitaille is deeply involved with SLA Quebec, a strong partner of ALS Canada, which helps him stay connected to people living with ALS.
“I try to get as practical as possible,” he says. “Science is fun, but there’s an ultimate goal that we should also be useful as fast as possible. That’s the main driver.”
The ALS Canada-Brain Canada Discovery Grant Program has been made possible by the Canada Brain Research Fund (CBRF), an innovative arrangement between the Government of Canada (through Health Canada), Brain Canada Foundation and ALS Canada.
To find out more about the 2022 ALS Canada-Brain Canada Discovery Grants, read the full press release here.
ALS Canada’s mission is to improve the lives of people affected by ALS through support, advocacy, and investment in research for a future without ALS. Interested in supporting projects like these? Donate now and make a difference today.
Toronto – The Ice Bucket Challenge continues to make an impact. Proceeds from the highly successful 2014 viral sensation have helped fund a comprehensive new resource to guide efforts to ensure people living with ALS in Canada receive the best possible care no matter where they live.
The first Canadian Best Practice Recommendations for the Management of Amyotrophic Lateral Sclerosis, published in the latest issue of the CMAJ (Canadian Medical Association Journal), recommends people living with the disease receive specialized multidisciplinary care, and addresses issues important to caring for people living with ALS in Canada, including timeliness of care, disease-modifying therapies, medical assistance in dying (MAiD) and caregiver support.
ALS, also known as Lou Gehrig’s disease, gradually paralyzes people because the brain and spinal cord are no longer able to communicate with the muscles of the body that we are typically able to move at will. With four out of five people dying within five years of diagnosis in Canada, providing timely, optimal care from coast-to-coast is critical.
“These Best Practice Recommendations are an important step forward for improving the lives of people living with ALS in Canada. We hope they will help enable ALS clinics across the country to meet a common national standard, offering the best possible care to their patients and helping them navigate this complex and devastating progressive disease,” says Dr. Christen Shoesmith, Neurologist & Motor Neuron Disease Clinic Director at London Health Sciences Centre and Chair of the ALS Best Practice Recommendations Working Group.
With the new guideline, people living with ALS in Canada, their families and healthcare providers are also now empowered to make informed, collaborative decisions and advocate for optimal care consistent with best available evidence and expert consensus.
Until now, there have been no recommendations explicitly for the care of people living with ALS in Canada. Clinicians and care teams have relied on older guidelines published in the US and Europe, which do not address issues important to care in Canada.
“It’s critical that each person living with ALS, along with their family and caregivers – no matter where they live in Canada – have access to the best and most appropriate care for their disease,” says Tammy Moore, Chief Executive Officer, ALS Society of Canada. “That’s why it’s important that these guidelines reflect Canadian experience, values and the healthcare system. We congratulate the Working Group and everyone involved in developing this important resource that will help to improve the standard of care.”
A 13-member pan-Canadian Working Group developed the guideline’s more than 130 recommendations across 13 areas of focus to provide an update on evolving best practices of care in ALS. In doing so, they assessed hundreds of published peer-reviewed articles, and sought the input of people living with ALS in Canada, ALS Societies across the country, as well as other health providers and organizations.
Funding for the guideline was made possible through donations from the 2014 Ice Bucket Challenge and the Canadian ALS Research Network (CALS), a partnership of clinicians across Canada that specialize in ALS research and clinical care.
“We thank Canadians who enthusiastically supported the ALS community through the Ice Bucket Challenge which helped bring these recommendations to life. We continue to strive to make significant impacts with the ongoing generosity and support of Canadians coast to coast,” Moore continues.
About the ALS Canada Research Program and Canada’s ALS Societies
The ALS Canada Research Program funds peer-reviewed research grants and fosters collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. As the only dedicated source of funding for ALS research in Canada, the ALS Canada Research Program aims to accelerate research impact by providing funding for the best ALS projects focused on translating scientific discoveries into treatments for ALS. Collectively through initiatives like the Walk to End ALS, ALS Societies across Canada support the ALS Canada Research Program. ALS Societies across Canada work together to maximize our collective impact and make the greatest difference for people affected by ALS. Our approach as eight independent organizations working in partnership enables us to respond to the variation that exists between provincial healthcare systems, where we each play a role in filling gaps by providing community-based support. ALS Societies advocate federally, provincially and locally on behalf of people and families living with ALS for policy changes that will have a meaningful impact today and in the future.
The ALS Canada Research Program awards $650K for three innovative new research initiatives, with an additional $1 million to be announced in 2021
TORONTO – The ALS Society of Canada today announced that as part of its 2020 research commitment, the ALS Canada Research Program is investing $650,000 in three new initiatives that will contribute to the development of potential ALS therapies and strengthen ALS clinical care in Canada. The investments are in keeping with the need for Canadians living with ALS to have access to quality care, and for innovative new treatments that change the reality of the disease and its devastating impact.
As the only dedicated source of ALS research funding in Canada, the ALS Canada Research Program plays an essential role in the sustained research investment needed to address unanswered questions about the causes and progression of ALS so that targeted treatments can be developed. The three initiatives are being funded following of a peer-reviewed grant competition that engaged a panel of scientific experts in prioritizing projects grounded in scientific excellence and with the potential to most quickly advance the field of ALS research, contributing to the knowledge base needed to develop treatments.
The research being funded seeks to answer the following questions:
- Will advanced brain imaging help to support ALS clinical trial enrolment and evaluation? Being able to objectively measure the progression of ALS is critical both for determining someone’s prognosis, and in assessing the effectiveness of clinical trials. With this $200,000 award Dr. Collin Luk, a clinician scientist at the University of Alberta, will study an advanced MRI technique called texture analysis to learn if it could be a biomarker for the onset and progression of ALS. He will collaborate with the Canadian ALS Neuroimaging Consortium (CALSNIC) to validate his findings. If successful, his research could help predict disease progression, aiding clinical trial recruitment and giving researchers an objective tool to better evaluate the effectiveness of promising new treatments. Dr. Luk will also study how this technique may be evolved to expedite ALS diagnosis, which is currently a lengthy and stressful process.
- Can wearable sensors improve the convenience and quality of clinical trials? Typically, people living with ALS provide their care team with updates on limb function only during clinic visits, which can occur months apart. Dr. Gordon Jewett from the University of Calgary will study if wearing arm and leg sensors could help to track changes in limb movement as people’s ALS symptoms progress, enabling movement data to be collected between clinic visits and improving the quality of movement reporting during clinical trials. This $200,000 grant is supported in partnership with the Mitsubishi Tanabe Pharma Canada, Inc. (MTP-CA) Fellowship Program., which enabled his Fellowship training. It could also make clinical trial participation more convenient, with fewer clinic visits required at a time when new advances in remote evaluation are more important than ever.
- Can identification of new biological targets represent promising new antibody treatment strategies for ALS? Dr. Silvia Pozzi, currently a postdoctoral fellow in Dr. Jean-Pierre Julien’s lab at the Université Laval CERVO Brain Research Centre, is aiming to develop antibodies that can delay or stop the progression of ALS. Her work will validate how the interaction of two specific proteins can activate a biological pathway that eventually leads to motor neuron death. While she will initially try to prevent this protein interaction in mouse models, if successful, she hopes to determine if similar effects can be seen in humans, which would result in a new target for the development of ALS treatments for clinical trial. This $250,000 grant is supported in partnership with la Fondation Vincent Bourque.
“ALS Canada is incredibly proud to support these promising young researchers. We look forward to each of them becoming the leaders of tomorrow and permanent contributors to the Canadian ALS research and care landscape,” said Dr. David Taylor, VP Research ALS Society of Canada. “The critical areas of clinical care, biomarker identification and development, clinical trial outcome measures, and identification of new treatment targets all contribute to improved care, treatments and quality of life for people living with ALS.”
Generous support from donors and partners have made this competition possible during the COVID-19 pandemic when health research funding is so challenged. In addition to the grants awarded in partnership with la Fondation Vincent Bourque and MTP-CA, all three initiatives have received funding support from provincial ALS Societies across Canada who contribute 40 percent of net proceeds from their local Walk to End ALS fundraising events.
Based on an additional grant competition taking place this fall, more projects receiving funding will be announced in early 2021.
About the ALS Canada Research Program and Canada’s ALS Societies
The ALS Canada Research Program funds peer-reviewed research grants and fosters collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. As the only dedicated source of funding for ALS research in Canada, the ALS Canada Research Program aims to accelerate research impact by providing funding for the best ALS projects focused on translating scientific discoveries into treatments for ALS.
Collectively through initiatives like the Walk to End ALS, ALS Societies across Canada support the ALS Canada Research Program. ALS Societies across Canada work together to maximize our collective impact and make the greatest difference for people affected by ALS. Our approach as eight independent organizations working in partnership enables us to respond to the variation that exists between provincial healthcare systems, where we each play a role in filling gaps by providing community-based support. ALS Societies advocate federally, provincially and locally on behalf of people and families living with ALS for policy changes that will have a meaningful impact today and in the future.
For a disease like ALS that has few treatment options and no cure, clinical trials are the best hope for the future. Participants in clinical trials play a critical role to help determine if a new treatment can slow, halt or reverse disease progression, or if a new intervention can improve the quality of life for themselves and others living with ALS. At the same time, they may gain access to new therapies before they are widely available and may be among the first to benefit if those therapies work.
“Participation in research is very meaningful to people with ALS and their families. There is a tremendous desire to give back, to add to knowledge about ALS and its treatment,” says Dr. Wendy Johnston, a neurologist who is director of the University of Alberta’s ALS Clinic and a professor at the University of Alberta in Edmonton. “It is also recognized that those who participate in clinical trials do better overall than those who do not, whether the trial drug worked or not. This may reflect the beneficial effect of hope or better monitoring of the disease progression.”
The challenge? Clinical trials are costly and time-consuming to set up and execute from start to finish. Large drug companies and investigators run clinical trials in locations where they can be assured the studies will be executed effectively, efficiently, and in large enough groups of people to establish whether the new treatments can make a measurable difference.
Stronger Together
In Canada, a group of ALS clinicians and researchers is helping to pave the way for Canada to become a preferred country for companies to conduct ALS clinical trials. The group began working together at a grassroots level in the 1990s and adopted the name CALS – the Canadian ALS Research Network – in 2008 under the leadership of Dr. Lorne Zinman, Director of the ALS Clinic at Sunnybrook Health Sciences Centre in Toronto. Many other leading neurologists played a pioneering role in establishing the network of clinicians that led to the development of CALS.
“We started out as a formal network of neurologists working together to improve patient education and help people with ALS gain access to the drug riluzole,” explains Dr. Colleen O’Connell, a physical medicine and rehabilitation specialist who leads the ALS Clinic at the Stan Cassidy Centre for Rehabilitation in Fredericton, New Brunswick and is an assistant professor at Dalhousie University in Halifax, Nova Scotia.
“We decided as a group that creating a research network would improve the availability of clinical trials across Canada,” says Dr. Johnston who, like Dr. O’Connell, she has been involved with CALS since its early days. “The larger centres were routinely being approached, but smaller, newer centres were not. Operating together as one network meant that we could coordinate responses to proposals from drug companies and investigators, and get trials up and running in a timely fashion with excellent recruitment.”
CALS Proves Its Mettle
In 2009, CALS was put to the test to facilitate Canada’s participation in a multicentre, international trial for lithium, an existing drug prescribed for mental disorders including bipolar disorder, depression and schizophrenia. The excitement about lithium as a possible treatment for ALS resulted from a small pilot study in Italy among 16 people that showed dramatic slowing of disease progression when taken together with riluzole. It was believed that lithium could help remove misfolded proteins and other cellular components that were not functioning properly. To confirm or refute the pilot study findings, CALS collaborated with investigators in the United States to design and execute a multicentre trial in a larger group of people. The trial took place at 15 sites across Canada, including large sites in Toronto, Montreal and Vancouver, as well as smaller sites in New Brunswick and Manitoba.
The researchers had planned to run the trial for up to a year but stopped it after six months when results showed that lithium was worsening participants’ ALS. This finding was particularly important given that some people with ALS were using lithium off-label outside of the study: where clinicians were aware of this usage they were able to advise their patients that lithium was doing more harm than good. “Another notable benefit of the lithium trial was that it put Canada on the map as an ideal location for ALS clinical trials,” said Dr. Johnson. “We demonstrated that as a group, CALS could respond to a research proposal, get a trial approved by Health Canada and recruit participants with ALS in a timely manner.”
Gaining Momentum in 2017
Dr. O’Connell and Dr. Johnston recently took the helm of CALS as co-chairs of the network in April 2017. Together with CALS members at 15 sites across the country, they are building on a strong foundation focused on helping people with ALS. “One of the visions that Dr. Johnston and I share is to keep our fingers on the pulse of new treatment opportunities. Our goal is that if people are interested, they can access information and participate in clinical research,” said Dr. O’Connell.
With an unprecedented uptick in the level of activity of ALS research worldwide, CALS is ready to meet the clinical research needs of large pharmaceutical companies and investigators alike. This fall, several new studies will be launched at sites across Canada. “We have attracted two big industry-sponsored drug trials, we have two investigator-led trials in preparation, and we are ready to start the pimozide trial pending final ethics review and regulatory approval,” said Dr. Johnston.
As the number of ALS clinical trials in Canada grows, more Canadians living with the disease will have earlier access to leading-edge experimental therapies.
In addition to bringing Canadian researchers together to share learning in person at the annual ALS Canada Research Forum, ALS Canada is providing administrative support to CALS to help the team establish a communications platform that will streamline information sharing between study sites.
CALS is supported administratively by the ALS Canada Research Program. Learn more about the ALS Canada Research Program and consider donating today.
Updated October 20, 2017
Staying active and independent for as long as possible is important for people living with ALS as the disease progresses. There are many ways in which to manage symptoms or receive care, but there often isn’t enough research performed to determine which approaches make the greatest difference.
To help address these knowledge gaps and pave the way for better care, ALS Canada funds Clinical Management Grants thanks to donations from the Ice Bucket Challenge. So far, two clinical management grants have been awarded: one that focuses on helping people living with ALS to drive safely for longer, and another that is researching the use of cannabis (marijuana) to help manage pain and discomfort.
Driving Assessment: Helping People with ALS to Drive Safely, Longer
Associated with independence, driving is a complex activity that requires physical, emotional and mental focus. Unfortunately, many of these abilities decline as ALS progresses. Unlike other diseases like stroke or Parkinson’s, there are few published resources to measure when a person’s ALS has progressed to the point that driving becomes unsafe. As a result, ALS clinical care teams regularly face decisions about when to discuss driving with patients and families, whether someone living with ALS can drive safely, or if a referral for an on-road test is needed.
A retrospective review conducted by members of the ALS Clinic at the Montreal Neurological Institute & Hospital (MNI/H) found that many people with ALS were not making changes to their vehicles that had the potential to enable them to prolong driving: for example, adapted foot controls can help with pedal access, a ball installed on the steering wheel can help with steering; and a BiPAP machine secured in the vehicle can help with breathing.
To help empower people living with ALS, the clinic at the MNI/H, led by Dr. Angela Genge, is implementing a multidisciplinary, systematic approach to assess driving safety. “This initiative focuses on how the whole care team can help people with ALS drive safely for a longer length of time,” said Kendra Berry, the clinic’s occupational therapist, in an interview with ALS Canada.
Berry, who recognized the gap in care several years ago, is collaborating with the entire MNI/H multidisciplinary ALS clinic team on this initiative. After reviewing existing broad guidelines for other conditions, the clinical team is trying to establish a standardized driving assessment to be used in their clinical setting. The complete assessment incorporates the ALSFRS-R, a cognitive behavioural screen, and questionnaires for people with ALS and caregivers. Berry has also accumulated a battery of tasks to simulate driving actions that she is incorporating into regular clinic assessments.
With all this input, the team will develop checkpoints that the whole care team can use to help people with ALS decide when they may benefit from an adaptation, need to be referred for a road test or transition to giving up driving.
“We start the conversation at the first or second visit, rather than the usual timing of a year or two after diagnosis,” said Berry. Earlier discussion and driving assessment mean that people with ALS are empowered to access driving adaptations earlier.
The project is set to launch the week of August 28, 2017, and the team will follow about 200 study participants for two years. When the project is complete, they plan to share their learning with ALS clinicians across Canada and the SAAQ in Quebec, the provincial licensing authority for drivers’ licenses, which could help pave the way for other provincial and national groups to adopt them in the future.
Studying the use of cannabis extracts to manage ALS pain and discomfort
In surveys, people with ALS have reported that cannabis (marijuana) helps to alleviate weakness, speech difficulties, excessive saliva production, difficulty swallowing, breathing issues, pain and stiff muscles, and can improve sleep, appetite and mood.
Yet while cannabis has been used for symptom management by anywhere from 15 to 40 per cent of people with HIV/AIDS, epilepsy, chronic pain, multiple sclerosis and ALS, often the doctors providing care aren’t aware that their patients are using it.
In 2012, ALSUntangled conducted a review of cannabis studies and potential in ALS.
Studies of the effect of cannabis on ALS to date have used animal models or small numbers of people with single doses of only one ingredient – whereas cannabis contains over 480 compounds. The two most well-known active ingredients are tetrahydrocannabinol (THC), the psychoactive component that has been linked to analgetic action, appetite stimulation, decreased muscle stiffness and improved sleep; and cannabidiol (CBD), which has been studied for anti-inflammatory, anti-anxiety and anti-nausea benefits.
“THC, CBD and other ingredients in cannabis affect many different systems in the body,” said Dr. Mark Ware during the ALS Canada Virtual Research Forum on August 9, 2017. “For example, THC works by binding to a specific receptor found in the brain, spinal cord, the gastrointestinal tract and other body tissues. By affecting these receptors, cannabis has an impact on the ways our nerves talk to one another.”
Dr. Ware has been conducting cannabis research for medical purposes for almost 18 years, mostly in the area of pain management. He is executive director of the Canadian Consortium for the Investigation of Cannabinoids, director of Clinical Research at McGill University Health Centre’s Alan Edwards Pain Management Unit, and an associate professor in the Departments of Family Medicine and Anesthesia at McGill University in Montreal, Quebec.
With a clinical management grant through the ALS Canada Research Program, Dr. Ware is leading a team of Canadian researchers who will conduct a pilot study of the use of cannabis in 32 people with ALS starting later this fall. The other co-investigators include Dr. Angela Genge, director of the ALS Clinic and Clinical Research Unit at the MNI in Montreal, Quebec, and Dr. Colleen O’Connell, a neurologist specializing in physical medicine and rehabilitation who leads the ALS Clinic at the Stan Cassidy Centre for Rehabilitation in Fredericton, New Brunswick and is an assistant professor at Dalhousie University in Halifax, Nova Scotia.
The researchers are working with Green Sky Labs, a Canadian company licensed by Health Canada to grow marijuana for medicinal purposes, to obtain oral capsule products with different ratios of THC and CBD formulated in a medical-grade oil. Study participants with ALS will be part of a crossover study over an eight week period, with five days on one dose, followed by a nine day washout period, then another five days on a different dose, until all four ratios have been administered. Researchers will collect information about ALS symptoms, pain, mood, sleep, appetite, cardiovascular and respiratory effects, and any adverse effects.
Health Canada is currently reviewing Green Sky Labs’ application for product approval. The researchers expect to begin the study by the early 2018. Results from this pilot study will inform future research studies that could seek to explore whether cannabis can slow disease progression.
Clinical Management Grants are one category of high-quality research funded through the ALS Canada Research Program. Read more about the ALS Canada Research Program and consider donating today.
ALS Canada Virtual Research Forum
Update: Dr. Ware was one of more than 20 speakers who participated in the ALS Canada Virtual Research Forum in August. You can listen to his full presentation online here.