Introducing the Alberta ALS Research Network (AARN)

We are thrilled to announce the newly-founded Alberta ALS Research Network (AARN), a pioneering initiative aimed at uniting top-tier researchers from the University of Alberta and the University of Calgary to accelerate the search for effective treatments and ultimately a cure for ALS.

This initiative, made possible through the generous donations from Betty's Run for ALS and the Walk Together for ALS, represents a significant investment of $1.1 million into innovative ALS research right here in Alberta.

AARN brings together a powerhouse team of researchers:

• University of Calgary: Dr. Gordon Jewett, Dr. Lawrence Korngut, Dr. Theo Mobach, and Dr. Gerald Pfeffer

• University of Alberta: Dr. Grayson Beecher, Dr. Peter Dobrowolski, Dr. Daniel Fok, Dr. Wendy Johnston, Dr. Sanjay Kalra

Their mission is to establish Alberta as a world leader in ALS research and care by fostering collaboration and excellence between these two renowned institutions.

Five Key Priorities

• Research Accessibility: Ensuring all Albertans living with ALS can participate in research.

• Start-Up Funding: Providing initial funding to innovative Alberta-based research to attract larger-scale support.

• Expansion of Existing Initiatives: Operating established research programs across both universities.

• Leveraging Infrastructure: Using Alberta’s research infrastructure to support cutting-edge projects.

• Training the Next Generation: Attracting and training new ALS researchers in Alberta.

A Coordinated Effort

To maximize the impact of this initiative, AARN will oversee research activities at both universities, connecting researchers, identifying opportunities for collaboration, and promoting resource sharing. Regular meetings will ensure continuous communication and brainstorming, fostering a collaborative research environment.

AARN will hit the ground running by expanding existing research programs and accelerating the completion of ongoing studies. Funding will be efficiently allocated to support new projects and expand peer-reviewed studies across the province. With a streamlined grant competition process, we aim to minimize administrative burdens while maintaining rigorous scientific standards.

Celebrating Our Donors

Through AARN, the ALS Society of Alberta and our dedicated donors will witness immediate and tangible results from their contributions. Annual reports and regular updates will highlight the progress and achievements of supported projects, ensuring transparency and recognition of donor impact.

With the support of the ALS Society of Alberta’s Board of Directors and the dedication of our researchers, AARN is poised to position Alberta at the forefront of global ALS research. This collaborative effort promises rapid advancements and an improved future for all Albertans affected by ALS.

Stay tuned for more updates as we embark on this exciting journey together!

Thank you for your unwavering support and commitment to finding a cure for ALS.

Research Updates

Canadian Neuromuscular Disease Registry

The CNDR is actively recruiting individuals with ALS who are using or have used edaravone or amx0035. Currently, the CNDR is collaborating with clinicians, scientists, patient organizations, and industry on important studies to evaluate the safety, tolerability, and effectiveness of ALS therapies to support access to drugs for Canadians who may benefit. 

The Canadian Neuromuscular Disease Registry (CNDR) is a national registry partnering with ALS clinics across the country aiming to improve access to care and therapies for people with ALS, and to increase the impacts of research in the Canadian healthcare system. The CNDR works with the community as valuable partners to provide essential clinical data related to people living with ALS. In order to participate, you will need to sign a form and agree for your physician to provide your medical information to the registry. Your privacy and security are always protected.

To join the CNDR community, please register here: www.cndr.org 

University of Alberta Research Updates Dr. Wendy Johnston

Updated September 2022

Study of ANX005 in Adults with Amyotrophic Lateral Sclerosis (ALS)

A multi-center, open-label study of intravenous administration of ANX005 in patients with ALS.

Study Type: Therapeutic, Phase 2a

Status: Active & Recruiting

A Study to Evaluate Safety, Tolerability, Pharmacodynamic (PD) Markers, and Pharmacokinetics (PK) of AP-101 in Participants with Amyotrophic Lateral Sclerosis (ALS)

A multi-center, randomized, double-blind, and placebo-controlled study to evaluate the safety, tolerability, PK, and PD of AP-101 in participants with familial and sporadic ALS.

Study Type: Therapeutic, Phase 2a

Status: Active & Recruiting

A Study to Evaluate the Efficacy and Safety of Reldesemtiv in Patients with Amyotrophic Lateral Sclerosis (ALS) (COURAGE-ALS)

A multi-center, randomized, double-blind, and placebo-controlled trial of reldesemtiv to assess the effects on functional outcomes in patients with ALS.

Study Type: Therapeutic, Phase 3

Status: Active & Recruiting

Efficacy and Safety Study of Oral Edaravone Administered in Subjects with ALS

A multi-center, randomized, double-blind and placebo-controlled study to evaluate efficacy and safety of oral edaravone in subjects with ALS.

Study Type: Therapeutic, Phase 3

Status: Active & Recruiting

A Study to Investigate the Safety and Pharmacokinetics (PK) of ABBV-CLS-7262 in Patients with Amyotrophic Lateral Sclerosis

A multi-center, randomized, double-blind, and placebo-controlled study to assess safety, tolerability, and PK in patients with ALS following multiple doses of oral ABBV-CLS-7262 and an active treatment extension.

Study Type: Therapeutic, Phase 1

Status: Active & Recruiting

Evaluation of MN-166 (Ibudilast) for 12 Months Followed by an Open-Label Extension for 6 Months in Patients with ALS

A multi-center, randomized, double-blind, and placebo-controlled 12 month clinical trial followed by an open-label extension phase to evaluate the efficacy and safety of MN-166 in patients with ALS.

Study Type: Therapeutic, Phase 2b/3

Status: Active & Recruiting

For more information on the ongoing ALS projects at the University of Alberta visit https://sites.ualberta.ca/ALS/

University of Calgary Research Updates

 Updated August 2021

Enrolling Clinical Drug Trial:

A Phase 3, Multi-center, double-blind, randomized, placebo-controlled trial to evaluate the efficacy and safety of reldesemtiv in patient with ALS                                                                                                                            Sponsor: Cytokinetics                                                                                        Trial Name: COURAGE-ALS

A Randomized, Double‑Blind, Placebo‑Controlled Study to Assess Safety, Tolerability, and Pharmacokinetics Following Multiple Doses of ABBV‑CLS‑7262 in Subjects with Amyotrophic Lateral Sclerosis Followed by an Active Treatment Extension

Sponsor: Calico Life Sciences

Phase: 1b

A Phase 2b/3, Multi-centre, randomized, double-blind, placebo-controlled, 12 month clinical trial to evaluate the efficacy and safety of MN-166 (Ibudilast) followed by an open-label extension in subjects with ALS                                                                                                                  

 Sponsor: Medicinova                                                                                          Trial Name: COMBAT ALS

A Phase 3 Randomized, Placebo-Controlled Trial With a Longitudinal Natural History Run-In and Open-Label Extension to Evaluate BIIB067 Initiated in Clinically Presymptomatic Adults With a Confirmed Superoxide Dismutase 1 Mutation (ATLAS)

Sponsor: Biogen MA Inc

Trial Name: ATLAS

Staff Contacts:    

Jose Martinez  jamarti@ucalgary.ca       403-210-7009 

Janet Petrillo   japetril@ucalgary.ca       403-210-7006

2019 Research Funding Announcement

After a rigorous competition, the recipients of the 2019 research funding grants have been announced.  The ALS Society of Alberta is so honoured to have played a role in helping fund cutting-edge Canadian research. We are so excited to share that nearly $1.4 million has been invested in 16 new Canadian ALS research projects.

For a terminal disease like ALS, that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body typically moved at will, transformative research is needed to help accelerate understanding of disease progression and provide pathways for future therapies. Continued investment in ALS research fuels the scientific discoveries that will bring hope for a future without the disease.

More than $850,000 is being invested in ten Project Grants, and $540,000 is being invested in six Trainee Awards that will provide momentum for the next generation of promising ALS researchers.

The projects funded will answer questions that will help to accelerate research discovery contributing to the development of potential ALS therapies:

• How do unique protein interactions explain TDP-43 behaviour in different people with ALS? $100,000 awarded to Dr. Mohan Babu at the University of Regina.

• How do environmental marks on RNA play a role in how ALS is caused? $100,000 awarded to Dr. Patrick Dion at the Montréal Neurological Institute at McGill University.

• Does prior exposure to common viruses influence ALS onset and disease progression? $100,000 awarded to Dr. Matthew Miller at McMaster University.

• Does a substance in gut or oral bacteria influence the disease course of ALS? $100,000 awarded to Dr. Minh Dang Nguyen at the University of Calgary.

• Can a new ALS mouse model provide important information for understanding and treating ALS? $100,000 awarded to Dr. Jeehye Park, at the Hospital for Sick Children (SickKids) Research Institute.

• Are the same faulty nerve-muscle connections in ALS mice also occurring in humans? $100,000 awarded to Dr. Richard Robitaille at the Université de Montréal.

• What is the role of the annexin A11 gene in ALS disease processes? $100,000 awarded to Dr. Peter St. George-Hyslop at the University of Toronto.

• Can advanced technology reveal the role of multiple cell types affecting ALS in humans? $98,400 awarded to Dr. Stefano Stifani at the Montréal Neurological Institute at McGill University.

• Can earlier palliative care consultation improve patient and caregiver quality of life? $55,437 awarded to Dr. Jocelyn Zwicker and Dr. Christine Watt at the Ottawa Hospital.

• Can speech-recognition technology help diagnose ALS? In partnership with Orangetheory Fitness, $100,000 awarded to Dr. Yana Yunusova at the Sunnybrook Research Institute.

• Can an animal model provide new insights into the formation of stress granules? $75,000 awarded to Alicia Dubinski, a PhD student in Dr. Christine Vande Velde’s lab at the Université de Montréal.

• What is the role of a newly discovered protein in ALS? La Fondation Vincent Bourque | ALS Canada – Brain Canada Ph.D. Studentship of $75,000 awarded to Myriam Gagné, a PhD student in Dr. Christine Vande Velde’s lab at the Université de Montréal.

• Is the loss of normal function of C9ORF72 in a particular cell type a key driver of ALS disease processes? $75,000 awarded to Rahul Kumar, a PhD student in Dr. Peter McPherson ‘s lab at the Montréal Neurological Institute at McGill University.

• Is an experimental drug that can prevent abnormal protein behaviour in ALS already out there? La Fondation Vincent Bourque | ALS Canada – Brain Canada Ph.D. Studentship of $75,000 awarded to Marc Shenouda, a PhD student in Dr. Janice Robertson’s lab at the University of Toronto.

• Could newly discovered tags on TDP-43 protein explain its abnormal behaviour in ALS? In partnership with Brain Canada, $75,000 awarded to Terry Suk, a PhD student in Dr. Maxime Rousseaux’s lab at the University of Ottawa.

• Can new understandings about nuclear speckles lead to new treatment options for ALS? $165,000 awarded to Dr. Ulises Rodríguez Corona, a post-doctoral student in Dr. Marlene Oeffinger’s lab at Institut de recherches cliniques de Montréal (IRCM).

The funding of the 16 research projects followed a competitive peer-review process, which engaged global ALS experts to identify projects grounded in scientific excellence and with the potential to most quickly advance the field of ALS research. The peer review was observed by people who have personal experience with ALS.  To find further information on each project please visit https://www.als.ca/research/als-canada-research-program/projects-funded/projects-funded-2019/.

November 15, 2018 - $1 million Invested in Eight Research Projects

November of 2018 was the announcement eight new research projects being funded with an investment of $1 million through the Canada Research Program.  These eight new research projects include multiple studies using cutting-edge techniques, never before applied to ALS, further examination of newly discovered proteins that may be critical to understanding how ALS works in the body, the use of specialized models of ALS to better understand how the disease occurs, a new spin on targeting abnormal immune and inflammatory mechanisms to treat ALS, and development of a unique Canadian protocol to measure the value of therapies on quality of life alongside medical evaluation in clinical trials.

The research being funded will seek to answer questions that will enable the exploration of new therapeutic targets, extend existing research to support further discoveries and help researchers gain a greater understanding about why ALS progresses differently in each individual.  The research questions to be answered are:

• Can unique fish models of ALS be used to understand nervous system signaling in ALS?
  $125,000 has been awarded to Dr. Gary Armstrong at the Montréal Neurological Institute.

• Can a protein that affects immune cells in the brain be reprogrammed to prevent or slow ALS?
  $125,000 has been awarded to Dr. Jasna Kriz at Université Laval.

• Can an effective measure of ALS-specific health related quality of life in clinical trials be developed?
  $124,993.81 has been awarded to Dr. Ayse Kuspinar and Dr. Vanina Dal Bello-Haas, both from McMaster University

• Are abnormal stress granules a unifying factor in ALS?
  $125,000 has been awarded to Dr. Eric Lécuyer at Institut de recherches cliniques de Montréal (IRCM).

• Is ALS pathology different in one region of the brain vs. another within a single person with ALS?
  $125,000 has been awarded to Dr. Janice Robertson at the University of Toronto.

• Can environmental factors affecting genes explain why ALS affects people differently?
  $125,000 has been awarded to Dr. Ekaterina Rogaeva at the University of Toronto.

• Does a unique, hidden protein called altFUS play a role in ALS?
  $125,000 has been awarded to Dr. Xavier Roucou at Université de Sherbrooke.

• Does a previously unstudied protein called hnRNP A1B play an important role in ALS?
  $125,000 has been awarded to Dr. Christine Vande Velde at the University of Montréal.

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

2017 funding competition completes $20 million research partnership with the Brain Canada Foundation following the Ice Bucket Challenge

The results of the 2017 funding competition for Canadian ALS research was announced today. Twelve exciting projects were chosen, including a multi-year study of a promising drug combination, three trainee grants that will help to nurture the next generation of Canadian ALS researchers currently pursuing their PhDs, two projects that will explore how ALS treatments could be delivered through the bloodstream, and an initiative that seeks to understand why the muscles of the eyes are often more resilient to ALS as other muscle groups shut down. 

These projects were made possible by the contributions from the ALS Societies across Canada and matching funds by Brain Canada, including the 40 per cent of proceeds dedicated from the WALK for ALS and Betty’s Run for ALS. 

The research being funded in 2017 seeks to answer the following questions that will help to move us from greater understanding of ALS to the development of therapies for human use:

• Can adjusting the levels of a “guardian” protein protect a protein that becomes toxic in most cases of ALS? $125,000 awarded to Dr. Marco Prado with collaborators Dr. Martin Duennwald and Dr.Flavio Beraldo, all from Western University

• Can image-guided focused ultrasound technology be used safely in people living with ALS as a means of delivering future treatment? $124,948 awarded to Dr. Lorne Zinman with collaborators Dr. Nir Lipsman, Dr. Kullervo Hynynen, Dr. Sandra Black, Dr. Todd Mainprize, and Dr. Agessandro Abrahao, all from the University of Toronto

• Can microscopic bubbles in our bodies be used to deliver ALS treatments through the bloodstream? $125,000 awarded to Dr. Derrick Gibbings with collaborators Dr. Baptiste Lacoste and Dr. Maxim Berezovski, all from the University of Ottawa

• Could targeting the activity of motor neurons in the spinal cord be a new way to diagnose and treat ALS? $125,000 awarded to Dr. Yves De Koninck, Université Laval

• Could the change in communication processes between motor neurons and the immune cells of the nervous system after an ALS diagnosis help to identify new treatment targets? $124,930 awarded to Dr. Stefano Stifani, McGill University

• Could touchscreen technology help to improve testing for the cognitive impairment that occurs in some cases of ALS? $110,770 awarded to Dr. Flavio Beraldo with collaborators Dr. Marco Prado and Dr. Vania Prado, all from Western University

• Could whole genome sequencing reveal new areas of genetic mutations that make some people more likely to develop ALS? $75,000 awarded to Jay Ross, a PhD student in Dr. Guy Rouleau’s lab at McGill University

• How might misfolded proteins that occur in ALS cause cells to die? $50,000 awarded to Sonja Di Gregorio, a PhD student in Dr. Martin Duennwald’s lab at Western University

• What can we learn from mice that are able to walk almost normally despite significant loss of motor neuron function? $125,000 awarded to Dr. Turgay Akay, Dalhousie University

• Why are eye muscles more resistant to ALS, and what can we learn about this that could help to preserve the function and use of other muscles? $121, 048 awarded to Dr. Richard Robitaille with collaborator Danielle Arbour, both from Université de Montréal

• Will probiotics that improve ALS symptoms in worms also work in mice? $75,000 awarded to Audrey Labarre, a PhD student in Alex Parker’s lab at the Université de Montréal

Spotlight on Dr. Sanjay Kalra: Largest ALS grant recipient in Canada's history

The ALS Society of Alberta is proud to be one of the largest donors to the national ALS research program, which funds incredible researchers in Alberta and nationwide. ALS is difficult to diagnose because no single test or procedure can firmly identify the disease. Current diagnostic tests for ALS focus on ruling out other diseases that share similar initial symptoms. For example, magnetic resonance imaging (MRI) is a test typically used to eliminate a diagnosis of cancer, multiple sclerosis or pressure on the spinal cord due to arthritis. A standard MRI analysis of a person with ALS, however, usually shows normal results.

The lack of a reliable diagnostic test for ALS means that it takes on average about a year for a diagnosis to be confirmed. “The delay means we can’t help people sooner, nor identify them early enough to enter a clinical trial,” said Dr. Sanjay Kalra in an interview. “This issue is actually hindering the clinical investigation of drug therapies. If we could identify people with different types and progressions of ALS more quickly, we could find a breakthrough therapy faster. A test is desperately needed that can determine if a drug is working in clinical trial.” Dr. Kalra is a professor in the department of medicine (neurology) and member of the Neuroscience and Mental Health Institute at the University of Alberta.

Looking for ALS in Brain Images

Dr. Kalra has been intrigued with finding a way to harness the power of imaging to uncover the early signs of ALS since his medical residency when he met neurologist Dr. Douglas Arnold, an MRI specialist at the Montréal Neurological Institute and Hospital. “My residency research rotation was only supposed to last six months, but after realizing the potential power of this technology in research and really enjoying working with people with ALS, I decided to continue and eventually stayed as a postdoctoral fellow specializing in MRI for ALS,” said Dr. Kalra.

Dr. Kalra has secured funding for his imaging research program from a number of sponsors including the Canadian Institutes of Health Research (CIHR), the major agency of the Canadian government responsible for funding health research in Canada. His focus has been to develop and validate advanced MRI methods that can be used as a biomarker, a biological marker that allows physicians to detect disease earlier, monitor disease progression and evaluate new therapies.

In 2013 he founded the Canadian ALS Neuroimaging Consortium (CALSNIC), a multidisciplinary team of experts from across Canada that includes neurologists, MRI scientists, computing scientists, neuropathologists and a biostatistician. Since then, the CALSNIC team has been working together on a national scale to develop advanced MRI methods to find biomarkers in people with ALS and related conditions.

Dr. Kalra and three colleagues at the University of Alberta in Edmonton conducted a preliminary study in 2014-2015 to look for biomarkers in brain images using MRI scans of 19 people with ALS and 20 healthy participants for comparison. They analyzed the images with 3D texture analysis, an advanced method that allowed them to look for statistically significant patterns of brain degeneration not normally visible to the naked eye. They examined voxels, tiny 3D spaces in the brain about a cubic millimetre in size.

The researchers found different texture features in regions of the brain affected by ALS and frontotemporal dementia in people with ALS compared to people without ALS. They also discovered that some features were associated with clinical observations, such as disease duration and differences in finger tapping speed. The study was funded in part by an ALS Canada Discovery Grant.

Going Big: The First Large Imaging Study in the World

Based on encouraging research results in this preliminary study and other work, Dr. Kalra wants to confirm the findings in a larger group of people with ALS. “The ALS field has seen an explosion of imaging studies in the last five years, but for the most part, they have been single-centre studies that used different methods in small groups of patients, so it has been difficult to draw conclusions on the best method to use,” he said. “To develop and validate the use of MRI biomarkers , especially for their potential use in clinical trials, we need to confirm that our these methods will work well on a large scale, in every clinic.”

In 2015, Dr. Kalra and a team of 13 other investigators applied for a grant from ALS Canada and were successful. The resulting ALS Canada – Brain Canada Arthur J. Hudson Translational Team Grant of $2.94 million – the largest grant awarded in ALS Canada’s history – is funding the first large multicentre imaging study focused on ALS in the world, according to Dr. Kalra. The study seeks to enroll over 700 volunteers split between people with ALS and people without ALS for comparison in seven locations: Calgary, Edmonton, Vancouver, London, Toronto, Montreal and Quebec City. Some sites are currently recruiting and others will be up and running soon. Participants receive a baseline MRI and clinical evaluation followed by two follow-up visits.

Always thinking ahead, Dr. Kalra is already considering how to expand CALSNIC further to increase the value of the network. “Another purpose of setting up the CALSNIC infrastructure is that it allows us to probe other questions. I’m excited that it has spurred other ALS research and collaborations,” said Dr. Kalra, “such as at the University of Toronto where Dr. Yana Yunusova is studying speech changes in patients across the CALSNIC network and will be able to compare the findings with our imaging data. In the future, I would like to see CALSNIC build a comprehensive resource of tissue, imaging and clinical descriptions that all scientists can access to understand the disease better.”

2016 ALS Research Highlights

The research investments made in 2016 will fund 20 projects across the country, enabling 31 researchers at eight academic institutions to engage in important ALS research. These include:

• With co-funding from Brain Canada (with financial support from Health Canada), two large-scale multi-year team initiatives – one of which is using stem cell technology to better understand and potentially treat ALS, while the other is studying in a new way the gene most commonly linked to ALS development.
• $1.5 million awarded to early-career researchers through three different grant programs that invest in the future of ALS research by developing the next generation of scientists and enabling them to focus their work on ALS.
• $700,000 to seven smaller studies, co-funded with Brain Canada (with financial support from Health Canada) that enable investigators to explore outside-of-the-box research.
• The first recipients of the ALS Canada Clinical Management Grant. This program funds research focused on avenues to maximize function, minimize disability and optimize quality of life through symptom management and support to families and persons living with ALS. The funding allowed a group of researchers to explore the use of cannabinoids, substances that have demonstrated therapeutic effects including anti-inflammatory, analgesic, and anti-anxiety, for ALS symptom management.

Upcoming Webinar: The Canadian ALS Neuroimaging Consortium (CALSNIC)

This is the first of a multi-webinar series hosted by ALS Canada. Click here to register.