ALS

Webinars

ALS Canada Research Program Webinar Series

Since 2015, ALS Canada offers webinar series to help keep you informed on the field of ALS research. Hosted by Dr. David Taylor, Director of Research at ALS Canada, this complimentary Webinar series provides information about the latest advancements in research, how your dollars are funding one of the best research programs in the world, and how to get involved in clinical trials to help make ALS a treatable, not terminal disease.

ALS Canada Webinar Series:  Update on ALS Clinical Trials.  On June 16, 2020 at Noon EST (11:00 AM CST), join Dr. David Taylor, Vice President of Research at ALS Canada for an upcoming webinar.  The focus will be the current state of clinical trials in Canada and Worldwide.  In this 1-hr session, you’ll learn about:  Phase 3 ALS clinical trials currently underway; Promising Phase 2 ALS clinical trials; Select early stage ALS clinical trials; and Current and future processes of clinical trial development in Canada Don’t miss the real-time Q&A session that follows to get answers to your ALS clinical trial questions. This webinar will be offered in English only. Register now.

ALS Canada Webinar Series: Update on ALS Clinical Trials. On June 20, 2019, ALS Canada’s Vice President of Research, Dr. David Taylor, presented this webinar as he continues his update on ALS clinical trials. In this session, Dr. Taylor talked about the following topics: Specific experimental treatments currently in trial, How to get involved with clinical trials, and Alternative therapies for ALS.

Pimozide for ALS: A Cross-Canada Clinical Trial Recruiting Now. April 24, 2019. A Phase 2 clinical trial is now recruiting at multiple sites across Canada to test whether treatment with a drug called pimozide slows the progression of ALS in humans. Pimozide is a medication originally used to treat schizophrenia that at low dose has shown promise in treating people living with ALS. In this webinar, Dr. Lawrence Korngut, the principal investigator for the study, will describe the evolution of pimozide from laboratory studies on worms and fish to the now active Phase 2 clinical trial. Dr. Korngut will also outline the design of the study and eligibility criteria for participation. This Canadian clinical trial is supported by an ALS Canada-Brain Canada Arthur J Hudson Translational Team Grant. Participating sites are located in Calgary, Edmonton, London, Toronto, Hamilton, Ottawa, Montreal (CHUM), Greenfield Park and Fredericton.

Targeting a Specific Toxic Protein as a Therapy for ALS. November 28, 2018. Presented by Dr. Jiming Kong, University of Manitoba. What if we could deliver treatments through the bloodstream that would assist the motor neuron in getting rid of a toxic protein known to cause ALS? During this webinar, Dr. Kong will be presenting his work that uses mice to test this innovative research in the lab. Register here.

News

This year marks the 80th anniversary of one of the most famous speeches in baseball history. July 4, 1939 was the iconic moment at Yankees Stadium when Gehrig’s speech shocked and inspired the world, as he told everyone about his diagnosis of ALS. Lou Gehrig’s legendary words portray resilience and strength in the face of adversity. Today more than ever, we need to continue the fight against ALS. Let’s work together to End ALS! Donate today.

A Prescription for Canada: Achieving Pharmacare for All. June 2019. Read the Final Report of the Advisory Council on the Implementation of National Pharmacare here.

June is ALS Awareness Month/ 2019 Flag Raising Ceremony. June 4th, at 9 am – City Hall. This is a symbolic event to kick off June as ALS Awareness Month. The Ceremony will be attended by Deputy Mayor Markus Chambers in recognition and support for ALS Awareness Month and people living with ALS. Come out and support us at this kick-off event! Learn more.

Can the key to slowing ALS progression be found in the immune cells of the brain? Learn more

Biogen to present new interim data from its phase 1/2 clinical study of Tofersen (BIIB067) for the potential treatment of a subtype of familial Amyotrophic Lateral Sclerosis (ALS). May 1, 2019. Read News Release.

Can antibodies help diagnosis ALS faster? Current methods for diagnosing ALS can take up to two years and rely heavily on ruling out other conditions that share similar signs and symptoms. It is believed that by the time ALS is diagnosed, therapies may be less effective as the damage to neurons is too extensive. Therefore, a better way of diagnosing ALS earlier is desperately needed. Learn more.

Be the Accidental Tourist and support people affected by ALS. Media release. April 11, 2019.

ALS Research Update | March 2019. Review the first 2019 ALS Research update, which summarizes the latest discoveries and advances in ALS/MND. The topics included in this update are: Researchers identify a potential new biomarker and drug target for ALS; How artificial intelligence is helping researchers to better understand ALS; Could a drug previously approved to treat hepatitis be successful in treating ALS?; Insights from the body’s natural immune response open up new treatment avenues for ALS; and Positive results from preclinical studies of a gene therapy for ALS and FTD.

Can a revolutionary gene-editing tool create better animal models for studying ALS? Dr. Gary Armstrong from the Montréal Neurological Institute at McGill University is exploring how to use revolutionary gene-editing technology to create better models for studying ALS.

The top 10 research stories of 2018. Last year, major scientific advances in Canada and internationally led to significant and exciting progress in ALS research. Discoveries that increase our understanding of ALS are happening far more often than ever before, and as a result many new experimental treatments are set to begin human clinical trials in the next few years.

Lite Up A Life for ALS.  Media release. December 3, 2018.

Thanks to donor generosity ALS Canada invests $1 million in innovative Canadian ALS research to provide a greater understanding of ALS. November 15, 2018. The ALS Canada Research Program awards eight new project grants in the pursuit of new therapy targets. Read more.

Grant to Fund Research Into New ALS Treatment.  Dr. Renée Douville, Associate Professor, The University of Winnipeg, has been awarded a three-year, US$300,000 grant from The ALS Association (U.S.) to study the role that viruses in the human genome play in ALS and examine the use of market-available medication in treating symptoms of the disease. Read more.

Health Canada approves new drug to treat patients with Amyotrophic Lateral Sclerosis (ALS). October 4, 2018. Read more.

ALS Research Update (ALS Canada). October, 2018. Learn about the most recent research discoveries on ALS/MND. Read more.

Past Webinars

2018 Virtual Research Forum. October 17, 2018. The annual Canada’s world class ALS research forum recently presented research updates that could lead to tomorrow’s treatments. To see the agenda of the Forum, click on this link.

ALS and the Environment. August 29, 2018. 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. Watch this webinar.

From Models in the Laboratory to ALS Therapies. July 25, 2018. Approaches for better modeling of human disease. Presented by: Dr. Vincent Picher-Martel, Laval University.

Update on ALS Clinical Trials.  June 27, 2018. Dr. David Taylor, VP of Research at ALS Canada. Webinar Series/ ALS Canada Research Program. A webinar presented by Dr. David Taylor on the process of clinical trials, as well as the current state of experimental therapies in the ALS treatment pipeline.

Bridging the Gap. May 30, 2018. ALS Canada Research Program. Developing new techniques to study the neuromuscular junction and why this may be important for developing ALS treatments. Guest presenter is Dr. Victor Rafuse.

The genetics of ALS. March 22, 2018. Presented by the ALS Canada Research Program. Guest presenter: Dr. Sali Farhan, Postdoctoral Research Fellow at Massachusetts General Hospital and the Broad Institute of MIT and Harvard. Dr. Farhan talked about gene discovery in ALS to date and the state of genetic research today, as well as why this type of research is important for the discovery of new treatments in the future.

The impact of an ice bucket: How Canadians’ generosity from the Ice Bucket Challenge is making a difference. February 28, 2018. Presented by Dr. David Taylor, VP, Research at ALS Canada.  Learn about how funds from the Ice Bucket Challenge were invested in Canada and what the expected impact will be for ALS research.

 Thinking Inside The Box. January 24, 2018. 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.

The ALS Treatment Pipeline. November 30, 2017. A webinar by Neurologists for Canadians affected by ALS. Presented by the Canadian ALS Research Network. Sponsored by the ALS Canada Research Program.

More News

Radicava (edaravone): Make your voice heard. In response to the Canadian Agency for Drugs and Technologies in Health’s call for patient input on Radicava (edaravone), ALS Canada with ALS Societies across Canada prepared a submission on behalf of the ALS/MND community. In June 2018, over 550 participants shared their experiences, perspectives and expectations through a survey and/or focus groups. Read the final 2018 ALS Canada CADTH Patient Input Submission.

National Pharmacare Online Consultation – Advisory Council on the Implementation of National Pharmacare. With more ALS treatments in the pipeline than ever before, the design of a national pharmacare program could have important implications for people diagnosed with ALS/MND in the future. Please consider taking this opportunity to make your voice heard by participating in the consultation. The online questionnaire will be OPEN from July 20 to September 28, 2018.

ALS Reasearch Update (ALS Canada). June, 2018. Learn about the most recent research discoveries on ALS/MND.

Consultation on Palliative Care. May 7, 2018. Health Canada is holding a public engagement asking that Canadians share their ideas, innovations and lived-experience related to palliative care. Your input will help the government develop a framework on palliative care for Canadians. Consultation CLOSED.

How new drugs become approved and available to Canadians. April 9, 2018. With the news that manufacturer MT Pharma is pursuing the regulatory channels necessary to bring the drug edaravone to Canada, the ALS community in this country finds itself facing the possibility of a second treatment option nearly 20 years after riluzole was approved. But how does any new drug become approved in Canada – and what exactly does approval mean?

Ice Bucket Challenge Funded Research Published in Scientific Journal “Cell”. April 23, 2018. New research from the University of Toronto and the University of Cambridge, funded in part by the Ice Bucket Challenge and the ALS Society of Canada’s partnership with Brain Canada, is having an impact on our understanding of ALS and expanding the pathways for research into ALS treatments.

Hall of Fame Opens New ALS Exhibit. April 23, 2018. New exhibit at the National Baseball Hall of Fame and Museum in Cooperstown, N.Y.

March, 2018. – ALS Reproducible Antibody Platform: Open Science to enable consistent data and accelerate reliable discoveries in Amyotrophic Lateral Sclerosis

February, 2018. – Read the latest ALS Research Update

May 8, 2017. – The U.S. FDA has approved a new ALS treatment for the first time in 20+ years.  It’s too soon to know what this could mean for Canadians, but in the meantime we have posted some background information on our website. A second ALS treatment – Radicava – US only 

January 10, 2017. – ALS Canada is thrilled to be part of Project MinE, an international research collaboration that will help to better understand why some people develop ALS while others do not, in order to better target the disease. Researchers working on Project MinE will collect and map the DNA profiles of 15,000 people with ALS and 7,500 control subjects to identify genetic patterns.

A project of this scope is unprecedented in ALS research.

Project MinE

November 23, 2016. – The ALS Society of Canada (ALS Canada), in partnership with Brain Canada, today announced $4.5 million in funding for nine new ALS research projects. This means that since the Ice Bucket Challenge became a social media phenomenon in 2014, nearly $20 million has been invested in Canadian ALS research at a time when it has the potential to make the greatest impact.

Read the full article here.  Cliquez ici pour français

July 28, 2016. – Ice Bucket Challenge Leads to ALS Gene Discovery

Le Défi du seau d’eau glacée mène à la découverte d’un gène lié la SLA – Cliquez ici pour français.

Earlier this week researchers announced that the gene NEK1 has been found to play a significant role in the development of amyotrophic lateral sclerosis (ALS). This landmark discovery is the result of an 11-country research collaboration that was funded through the Ice Bucket Challenge. The research team included 3 Canadians, one of whom was directly funded by the ALS Society of Canada for their work during this discovery.

This finding will trigger future studies that focus specifically on the NEK1 gene. It is a compelling example of how donor dollars can lead to landmark research results, and speaks to the ongoing need to fund ALS research. In Canada, the Ice Bucket Challenge resulted in more than $20 million in research funding through ALS Canada – more than 10 times the annual research investment the organization has typically been able to make. Your support of further research will support further advances that will make ALS a treatable, not terminal, disease.

 For more information:

• Read Globe and Mail article: Ice Bucket Challenge credited with ALS Breakthrough
• Read the research paper as published in Nature Genetics
• Learn about an additional gene recently identified to play a role in the development of ALS
• Donate now and support further research to support advances that will make ALS a treatable, not terminal, disease.
• Contact Diana Rasmussen at drasmussen@alsmb.ca or (204) 837-1291.

Compassionate Care Benefits. The ALS Societies across Canada are pleased to announce that effective January 3, 2016, the proposed enhanced Compassionate Care Benefit program will allow claimants to collect up to 26 weeks of benefits, up from the current six weeks. Click here to read more.

November 19, 2015. – ALS Research in Canada Receives Historic $15 Million Dollar Investment

A University of Manitoba research team investigating a cure for amyotrophic lateral sclerosis (ALS) was awarded $1.6 M today as one of only five Canadian research teams selected for a translational team grant.

ALS Societies across Canada and the ALS Canada Research Program, in partnership with Brain Canada, announced $15 million in funding to be invested amongst research teams across Canada to support ALS research.

See a breakdown chart by clicking here, English or en francais

October, 2015. – ALS Canada Research Program Webinar Series | Creative Assets ALS Canada is launching a webinar series to help keep you informed on the field of ALS research. Hosted by Dr. David Taylor, Director of Research at ALS Canada, this complimentary Webinar series will provide information about the latest advancements in research, how your dollars are funding one of the best research programs in the world and how to get involved in clinical trials to help make ALS a treatable, not terminal disease.  To see the schedule of webinars being presented and to register, please click on the link above.

ALS Canada-Brain Canada Career Transition Award Recipient Announcement. August 25, 2015.

ALS Drug Shortage. Mayo 11, 2015. It came to the attention of the ALS Society of Manitoba that some clients who are taking the ALS drug Rilutek and or the generic brand form of it were finding that there is a shortage of the drug in our Province. Click here to read more.

2015 Doctoral Research Award Recipients Announced. April, 2015

ALS Canada Announces Funding for 2014 Discovery Grants. December, 2014.

Arthur J. Hudson Translational Team Grant Announced. January 8, 2014.

The Arthur J. Hudson Translational Team Grant was first announced on May 3, 2014 at the ALS Canada Research Forum and the inaugural competition deadline was July 1, 2014. This new grant program is designed to fund teams of Canadian researchers to accelerate the movement of ideas out of the laboratory and into the clinic with the hope of assisting development of new therapeutics for ALS. It is the cornerstone of our ALS Canada Research Program designed to emphasize bench-to-bedside translation. For the first time ever, ALS Canada, in partnership with Brain Canada, have utilized an International Peer Review Panel consisting of seven European and American ALS experts, spanning the basic to clinical spectrum, who convened in Toronto in November to determine the top project amongst strong competition.

It is a great pleasure to announce that the recipient of the first Arthur J. Hudson Translational Team Grant is a team led by Dr. Lawrence Korngut, MD at the University of Calgary and also includes Dr. Lorne Zinman, MD from Sunnybrook Health Sciences Centre and University of Toronto. Together, they will pursue “A randomized controlled trial of pimozide in subjects with ALS”; a Phase II study involving 100 participants across 8 ALS clinics across Canada.

This trial, led by the Principal Investigator of the Canadian Neuromuscular Disease Registry (CNDR) and the Chair of the Canadian ALS Research Network (CALS) will examine whether pimozide, a drug already approved by Health Canada for use in psychoses like schizophrenia and Tourette’s syndrome, might slow progression of ALS. Pimozide is particularly effective at stabilizing neuromuscular function, which means it can strengthen the connection where the motor neuron meets the muscle (called the neuromuscular junction or NMJ). It is hoped that by strengthening this connection, there will be preservation of transmission of signals from the brain to the muscle and slowing of paralysis in ALS.

This Hudson Grant will also fund the validation of an exciting new potential biomarker. Biomarkers are ways of monitoring the body (eg. looking for something in blood or doing a particular physical examination) to either diagnose ALS earlier, select individuals for a trial or monitor effectiveness of a treatment. In recent years, ALS researchers have placed great emphasis on clinical trial biomarkers that ensure the drug is doing the action it is intended to in humans. Without knowing this, it is impossible to determine if an experimental ALS treatment worked or didn’t work as a result of affecting the body function scientists think it was targeting. For example, it was believed that the Biogen drug dexpramipexole, which was tested in a Phase III clinical trial in 2012, improved the function of energy producing machinery in cells called mitochondria. When dexpramipexole failed to slow down ALS progression, there was no biomarker used to determine if this failure was a result of mitochondrial function or not because it was not tested.

In ALS clinics, neurologists utilize a procedure where they can stimulate an individual’s motor neurons to examine their ability to trigger muscle function. For decades, neurologists have observed that repetitive stimulation of motor neurons can lead to decreased response of muscles in many people living with ALS (called decremental response) and it is hypothesized that this may be a result of poor NMJ connectivity and transmission as motor neurons degenerate. Since pimozide strengthens or restores the NMJ, Dr. Korngut’s team will measure whether this decremental response can be a biomarker to recruit individuals likely to benefit from pimozide, but also to monitor whether pimozide is acting as hypothesized so a positive or negative result on ALS can be properly interpreted. This means if pimozide does slow ALS progression, we will know whether or not it is a result of NMJ connectivity.

“What is most exciting about this portion of the project is that Dr. Korngut will examine the effectiveness of this biomarker in a small pimozide human trial that is already underway at the University of Calgary” said Dr. David Taylor, Director of Research for ALS Canada. “Should it work, the biomarker can also be used to recruit individuals with the highest likelihood to respond to pimozide treatment for the Hudson Grant funded, 100 participant clinical trial across the country.”

This project will also highlight the exceptional infrastructure of the Canadian ALS research community. The CNDR, led by Dr. Korngut, is an innovative platform for organizing patient information to facilitate clinical research and is routinely recognized as one of the best organized ALS registries in the world. In this trial, the CNDR will allow for more efficient recruitment of participants, better data management and improved monitoring of participants following the trial. Furthermore, CALS, led by Dr. Zinman, is the incorporated network of 15 academic ALS multidisciplinary clinics across Canada. Working together the CNDR and CALS are utilizing optimal infrastructure to initiate and execute clinical trials in a manner that is unique to Canada.

Testing pimozide in the clinic is the next step in a series of projects that have taken several years to develop. Pimozide was first discovered as a potential treatment for ALS in the Canadian labs of Drs. Pierre Drapeau, Alex Parker and Richard Robitaille at Université de Montréal working with zebrafish, worm and mouse genetic models. These individuals are pioneers of the translational team concept in Canada and ALS Canada/Brain Canada are fortunate to have the opportunity to support the first large clinical study produced by this visionary pipeline. We look forward to watching the progress of this study with great excitement. ALS Canada is committed to increasing the opportunity for Canadians living with ALS to participate in clinical trials of exciting new experimental therapeutics. The first Arthur J. Hudson Translational Team Grant will provide this opportunity and lay further groundwork for future clinical trials in Canada.

David Taylor, PhD
Director of Research
ALS Society of Canada

ALS Canada Announces Funding for 2014 Discovery Grants. December 3, 2014.

The ALS Canada Research program was established to fund the top ALS research in Canada to meet ALS Canada’s strategic vision to find a treatment for ALS. Thanks to your support, we are pleased to announce the recipients of the 2014 ALS Canada-Brain Canada Discovery Grants.

This announcement marks the first grants named in the partnership with Brain Canada. As part of the ALS community, we are tremendously excited about that this partnership is able to fund world class projects that will ultimately move the field of ALS research forward.

Click here to learn more about each recipient and their project.