Free to access and open to all, our webinars will help you learn about the latest advancements in ALS research, how donor dollars are supporting one of the best ALS research programs in the world and how to get involved in clinical trials to help make ALS a treatable, not terminal, disease. Some webinars feature guest speakers from the Canadian ALS research community who share details about their work and address key topics in the field.
Research Glossary
This glossary contains a list of scientific and medical terms and definitions that are relevant to amyotrophic lateral sclerosis (ALS). It can be used by anyone from within the ALS community including recently diagnosed individuals, caregivers, medical professionals, researchers, as well as by the general public. The research glossary was developed to help support knowledge-sharing by helping to provide clarity around terminology that may be unfamiliar to our readers.
ALS Canada Webinar: Update on ALS clinical trials in Canada and around the globe
Dr. David Taylor, VP of Research, hosted a webinar on June 15, 2021 exploring the current state of clinical trials globally and in Canada, where he also addressed some key questions around specific studies and clinical trials in general.
Clinical trials are a critical step in the development of ALS treatments – they are a series of studies to determine if a potential therapy is safe, tolerable and most importantly, effective at treating the disease.
In this special bonus session from the 2021 ALS Canada Research Forum, Dr. Martin Duennwald, from Western University, gave a talk entitled “Hsp90 and its co-chaperones modulate protein misfolding in ALS.”
You will also have the chance to see three minute “poster” presentations from:
ALS Awareness Month 2020: Update on global ALS clinical trials
Dr. David Taylor, VP of Research, hosted a webinar on June 16, 2020 exploring the current state of clinical trials in Canada and worldwide. In this 1-hr archived session, you’ll learn about:
Phase 3 ALS clinical trials currently underway
Promising Phase 2 ALS clinical trials
Select early stage ALS clinical trials
Current and future processes of clinical trial development in Canada
An update on clinical trials in Canada and around the world
This webinar is part two of a two part series that focuses on clinical trials for ALS in Canada and across the world.
This is part two of a two part series where Dr. David Taylor, VP of Research at ALS Canada, continues to explore current ALS clinical trials, specific experimental treatments, how you can get involved in a clinical trial near you, and alternative ALS treatments.
An update on clinical trials in Canada and around the world
This webinar is part one of a two part series that focuses on clinical trials for ALS in Canada and across the world.
Dr. David Taylor, VP of Research at ALS Canada, explores how clinical trials currently work, the importance of biomarkers, a new way of doing ALS clinical trials and the current state of experimental therapies in Canada and worldwide.
How does the skin of people living with ALS differ from the skin of others?
Dr. François Gros-Louis provided an overview on the work his research lab is doing with ALS at l’Université Laval, using skin as an alternative to brain tissue to identify molecular biomarkers in ALS. Please note that this webinar was presented in French only.
Can exposure to toxins and other environmental factors play a role in the development of sporadic ALS?
Zebrafish can be a useful model to study motor neuron degeneration, and are particularly useful for understanding the role that different cells, such as glial cells, may play in the onset and progression of ALS.
Jessica Morrice, a PhD student in Dr. Christopher A. Shaw’s lab at the University of British Columbia, uses zebrafish to understand how toxins can cause motor neuron degeneration – an understanding that could eventually lead to slowing down or stopping ALS.
When it comes to testing new therapeutic approaches for ALS, researchers have a wide variety of animal models to choose from. However, many drugs that have been shown to be effective in animal models have failed in human clinical trials, leading to the question: which animal models are the most effective for modeling human disease?
In this webinar, Dr. Vincent Picher-Martel from Laval University presents some advantages and disadvantages of the animal models currently available for the study of ALS. He also discusses his work using mice models to simulate mutations in Ubiquilin-2 and TDP-43, two genes known to contribute to the development of ALS.
This webinar was presented in both French and English. Click on the Français tab for the link to the French webinar.
How touchscreen technology may help to identify cognitive impairments in ALS mice and pave the way for future treatments
This webinar was presented by Dr. Flavio Beraldo, Adjunct Professor and research associate at Western University.
Learn about how touchscreen technology could improve testing for cognitive impairment in ALS, and how these tests could help find treatments in the future. Please note that this webinar was conducted in English only.
A webinar by Neurologists for Canadians affected by ALS
Presented by the Canadian ALS Research Network
Sponsored by the ALS Canada Research Program
The Canadian ALS Research Network (CALS), a group of ALS clinicians and researchers across Canada, held a webinar on November 30, 2017 offering perspectives on ALS treatments including edaravone as well as others in development. The webinar was a panel discussion featuring:
Dr. Wendy Johnston, Director of the Edmonton ALS Clinic and Co-Chair of CALS
Dr. Geneviève Matte, Director of the ALS Clinic at CHUM – Hôpital Notre-Dame
Dr. Colleen O’Connell, Director of the Fredericton ALS Clinic and Co-Chair of CALS
Dr. Christen Shoesmith, Director of the London ALS Clinic
The webinar was moderated by Dr. David Taylor, Vice President Research for ALS Canada, which sponsored the webinar. He provided a brief overview of edaravone, masitinib, NurOwn, tirasemtiv and other experimental treatments currently in clinical trials.
The webinar was conducted primarily in English, but efforts were made to provide some information in French.
Note that the archived version of the webinar has been modified from the live version that originally aired, in which the possibility of placebo effect was discussed using an example of an individual who had reported positive results with treatment. This statement was based on assumption and has since been retracted and removed. An explanation of placebo effect remains because it is important for webinar listeners to be aware of the possibility of placebo responses when pursuing any type of treatment.
For a disease like ALS that has no cure and few effective treatments, research is a tremendous source of hope. Select presentations from the Virtual Research Forum are available for on-demand viewing below. Please note that the presentations are conducted in English – we will be identifying future opportunities to offer research updates in both official languages.
A multi-national initiative, establishing a global resource of human data that will enable scientists worldwide to understand the genetic signature that leads someone to develop ALS.
A five year research project, searching for biomarkers of ALS and leaving a legacy resource to improve diagnosis and understanding of ALS for the future.
Mutations in the C9ORF72 gene have been identified as the most common genetic cause of ALS. Toxic substances, called dipeptide repeats (DPR), produced as a result of these mutations are believed to play a key role in the development of ALS. In this webinar, Dr. Gendron, a Canadian working at the Mayo Clinic in Jacksonville, Florida, describes her work to determine whether these cellular byproducts can be used as biomarkers of ALS and allow researchers to more effectively test new ALS treatments. Dr. Gendron explains that the levels of these toxic DPR substances in biological fluid samples of people living with C9ORF72-associated ALS can help researchers to determine things like whether the drug is interacting with the correct target, how much of the drug is needed, and when the drug should be given.
With a clinical management grant through the ALS Canada Research Program, Dr. Mark Ware is leading a team of Canadian researchers who will participate in the upcoming Phase 2 clinical trial designed to test the safety and efficacy of using cannabis (marijuana) extracts to better manage the symptoms of ALS. Previous studies have shown that cannabis-based medicines may improve quality of life by reducing pain, drooling, speech difficulties, breathing issues, depression and sleep disorders. Dr. Ware explains how cannabis can influence such a variety of different symptoms and presents preliminary work that highlights the positive effects cannabis-based medications can have in ALS animal models.
In this webinar, Dr. Michael Strong discusses the relationship between ALS and frontotemporal dementia. It is well-known that a subset of people living with ALS will develop or present with some form of frontotemporal dementia. Frontotemporal dysfunction is linked to problems with memory, language and behaviour (e.g. irritability, loss of sympathy, etc.). Dr. Strong introduces revised criteria for the diagnosis of frontotemporal dysfunction in ALS that will be valuable to researchers, clinicians and people affected by ALS. He also goes on to present recent work that identifies the toxic protein modification responsible for frontotemporal dysfunction in many ALS cases and highlights drug treatments that have proven to be effective at preventing this toxic modification in laboratory studies.
Pimozide is a medication originally used to treat schizophrenia that has shown promise in treating people living with ALS. In this webinar, Dr. Lawrence Korngut describes the evolution of pimozide from laboratory studies on worms and fish to the Phase 2 clinical trial that will launch in late 2017. This Canadian clinical trial is supported by an ALS Canada-Brain Canada Arthur J Hudson Translational Team Grant and will test whether treatment with pimozide slows the progression of ALS in humans. Dr. Korngut, the trial’s principal investigator, outlines the design of the trial as well as the eligibility criteria for participation.
Many people living with ALS self-experiment with alternative treatments that are advertised to slow, stop or reverse ALS without trustworthy scientific evidence that backs up these claims. Often these alternative treatments have no therapeutic benefit and in some cases can even be harmful. This is why Dr. Richard Bedlack created ALSUntangled, an online forum designed to engage people living with ALS in shared decision-making about what alternate treatments are worth trying. The ALSUntangled team conducts comprehensive reviews of the most-requested therapies using a scientific approach of gathering evidence and reporting results. In this webinar Dr. Bedlack describes the ALSUntangled process, as well as two new programs he is founding based on the study of ultra-rare cases where ALS symptoms have reversed (referred to as an ALS reversal). The first program is called Replication of ALS Reversals (R.O.A.R) and is a pilot study designed to test alternative treatments that have been associated with ALS reversals. The second is the Study of ALS Reversals (St.A.R.) and is a program designed to identify and gather data on very rare cases where ALS reversals are reported to occur.
AB Science’s Alain Moussy (Founder & CEO), Laurent Guy (CFO) and Dr. Olivier Hermine (President of the Scientific Committee) discuss the results of the recently completed Phase 2/3 clinical trial of masitinib. Masitinib is a drug currently in development that reduces inflammation in the body believed to be linked to the development of ALS. The clinical trial results show that masitinib does have a therapeutic benefit by slowing the progression of ALS. A global clinical trial for masitinib, led by Canadian investigator Dr. Angela Genge, is set to begin in late 2017 to confirm the results of this study.
Dr. Neil Cashman
Vancouver Coastal Health ALS Clinic; University of British Columbia
Within a cell, a protein must fold into the appropriate 3D shape in order to perform its intended function. When a protein does not fold into correct shape the outcome can be harmful to cells. Prion-like proteins are especially dangerous because they can cause other normally folded proteins to adopt an abnormal shape creating a domino effect of toxic protein misfolding that spreads throughout the nervous system. Many years ago Dr. Neil Cashman hypothesized that ALS may be caused by the misfolding of prion-like proteins. In this webinar, Dr. Cashman describes data that support this hypothesis as well as new drugs that may be able to stop the domino-like protein misfolding thought to be a problem in ALS.
Bastien Paré, a PhD student in Dr. François Gros-Louis’ lab at Laval University and recipient of an ALS Canada Doctoral Research Award, is studying ALS in a new way: he is investigating the relationship between the skin and ALS. Neurological conditions, like ALS, are often accompanied by changes in the elasticity or texture of the skin which may be a result of both skin and brain tissue having the same origin during fetal development. By studying the unique skin characteristics of people living with ALS, Bastien hopes to develop new biomarkers that will help researchers to better understand the disease and even lead to the development of new ALS treatments. Furthermore, he is interested in the possibility of a simple skin test that could someday allow for earlier diagnosis.
Abnormalities in a protein called TDP-43 are present in approximately 97% of all ALS cases. TDP-43 is normally found in the nucleus of a cell (a central compartment where our DNA is located); however, in people living with ALS it is often found in the cytoplasm (the area outside of the nucleus) where it does not belong. This altered location of TDP-43 is thought to be harmful to cells. Previous work looking at TDP-43 in cell models revealed that another protein called ataxin-2 can actually make TDP-43 more toxic. Building on this work, Lindsay Becker, a PhD student in Dr. Aaron Gitler’s lab, studied the effects of changing the amount of ataxin-2 in mice with ALS. Lindsay found that when the amount of ataxin-2 is decreased, ALS mice live longer with increased muscle function suggesting that reducing ataxin-2 levels may represent a promising new strategy to treat ALS in humans.
When you want to perform a voluntary movement, a signal moves from your brain through the motor neurons in your spinal cord and into the muscle where the movement is achieved. The area in your body where the muscles and the nerves communicate is called the neuromuscular junction (NMJ). Elsa Tremblay, a PhD student in Dr. Richard Robitaille’s lab, and recipient of an ALS Canada Cycle of Hope Doctoral Research Award, uses animal models to investigate changes in the NMJ caused by ALS. Experimental tests reveal clear differences in the NMJs of mice with ALS that affect muscle function and fatigue. The hope is that by targeting these differences new ALS treatments can be developed. A Phase 2 clinical trial of pimozide, a medication shown to enhance communication at the NMJ in animal studies, is being funded through the ALS Canada Research Program.
Research projects marked with an asterisk (*) have been funded by the ALS Canada Research Program thanks to the generosity of donors and partnerships with ALS Societies across Canada.
Dr. Jan Veldink
Professor Martin Turner
Nick Ramsey
