Category: Research Funding

Within the brain, neurons are constantly communicating with each other. These communications can be inhibitory or excitatory, essentially like a stop or go signal. For our brains to function properly we need to have a balance between these two signals. Having too much of the excitatory, or “go” signal, has been linked to a variety of disorders, including ALS.

As a result of Canadians’ generosity during the Ice Bucket Challenge, researchers at the University of Toronto have discovered that by specifically targeting motor neurons in the motor cortex of mice — a region of the brain that controls voluntary movement – they can correct the imbalance of the “go” signal and delay the onset of ALS symptoms. To do this, a virus was used to deliver engineered proteins, that were activated by a pharmaceutical drug, to the cortex of mice genetically altered to carry an ALS gene mutation (SOD1). The findings were recently published in Brain, a scientific journal, so that they can be shared more broadly with the research community.

Why is this discovery important? It’s a new area of research telling researchers that targeting the motor cortex to balance inhibitory and excitatory signals is worth studying further as a potential way to slow ALS progression in humans.

This work was supported through the ALS Canada Research Program, in partnership with Brain Canada (through the Canada Brain Research Fund, with support from Health Canada). It is because of the generosity of donors that the ALS Canada Research Program has been able to continue to invest in research discoveries that build the foundation to move us closer to a future without ALS. While the pace of research never seems fast enough, continued investment in the ALS Canada Research Program helps to accelerate research discovery and contribute to the development of potential ALS therapies. For more information on the study, you can read the full press release from the University of Toronto.

Because of you, the ALS Canada Research Program can continue to fuel the scientific discoveries that further our understanding of ALS. Your support makes a difference. Please consider making a donation to help create a future without ALS.

In late 2018, Facebook began offering the option for Canadians to create fundraisers for nonprofit organizations or for personal causes. Since then many of you have reached out to us with questions about how these giving options can be used to support ALS Canada. We know Facebook can be a quick and easy way to raise money and engage your friends and family, and are grateful to all who have chosen to support us in this way.

There are some important things to be aware of when creating or donating to Facebook fundraisers, so here’s a primer on the options available and how they work – along with using our ALS fundraising website.

1. Facebook: Raising money for a nonprofit organization

Visit facebook.com/fundraisers. You can create a fundraiser for ALS Canada by searching for “ALS Society of Canada” from the list of registered charities. Donations are processed at no cost to the donor or to the individual who set up the fundraiser. For your donation, you will receive two separate emails: a transaction receipt for the payment and your official donation receipt. These are sent by Facebook on behalf of their fundraising partner, the PayPal Giving Fund, which delivers the funds to ALS Canada.

Some things to be aware of when creating or donating to Facebook fundraisers to support ALS Canada:

• If you or your donors have any questions about setup, donations, donation receipts or refunds, you must contact the Facebook Fundraiser Support Centre.
• When you donate through Facebook, we do not receive your contact details and therefore are not able to communicate with you.
• As per Canada Revenue Agency regulations, we are not allowed to issue tax receipts for donations that are made to a third-party charity—in this case, the PayPal Giving Fund.

 

2. Facebook: Raising money for a personal cause

Personal causes generally refer to fundraisers in response to individual needs – for example a family that requires financial support after losing their home to a fire, or an education fund for a child whose parents have suddenly passed away.

If you create or give to a personal fundraiser on Facebook, a portion of the donation is used to cover processing fees. Funds are deposited to the bank account specified by the person who set up the fundraiser. The person who set up the fundraiser is responsible for making sure the donations are sent to ALS Canada.

Some things to be aware of when creating or donating to personal causes on Facebook:

• Questions about setup, donations, donation receipts, or refunds must be directed to the Facebook Fundraiser Support Centre.
• Tax receipts are not issued when a person donates to a personal fundraiser because the donation doesn’t go directly to a charity but instead goes to the bank account specified by the person who set up the fundraiser.
• Only a charity with a registered charitable number from the Canada Revenue Agency can issue tax receipts.

Adam Foley used My ALS Fundraiser to meet (and surpass) his $12,000 fundraising goal for his 900km bike ride in memory of his brother, Matthew.

3. ALS Canada’s “My ALS Fundraiser” platform

Visit My ALS Fundraiser at www.als.ca/myalsfundraiser to create your own fundraising event or find an existing event to give to. When you fundraise through our platform, ALS Canada will receive the contact information for each donor and automatically issue them a tax receipt by email when they donate online. This helps us stay in touch and provide support for your tax receipting requirements. We also have lots of resources available here, including an event organizer toolkit, templates for things like posters or social media, and best of all, your very own ALS Canada event coach to support you every step of the way.

Interested in fundraising with us? Contact our team at teamals@als.ca or head over to the My ALS Fundraiser website to get started.

Thank you to all our donors for their generosity and continued support—in any way you choose to give.

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 with ALS Canada. “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.”

ALS Canada has been funding world-class research across Canada for over 30 years to enable discovery of new treatments and therapeutic interventions that have the potential to make an impact on altering the course of the disease or improving the quality of life for people with ALS.

Read more about the ALS Canada Research Program and consider donating today.

ALS Canada and Brain Canada award $4.5 million in research funding

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.

ALS, or amyotrophic lateral sclerosis, is a disease that gradually paralyzes the body, leaving people without the ability to move, talk, swallow and eventually breathe. Most people die within two to five years of being diagnosed with ALS because the disease has no effective treatment or cure. However, ALS research has advanced to a point that many ALS research experts believe effective treatments are now a matter of ‘when’ not ‘if.’

“We hear often from people and families living with ALS that the promise of research discovery is something they can be hopeful about. The challenge is that research takes time, which is exactly what people living with ALS don’t have – and why the Ice Bucket Challenge has been such a game-changer,” said Tammy Moore, CEO of ALS Canada. “Because of the increased funding that the Ice Bucket Challenge has made available, we have been able to make more significant research investments than ever before. We are grateful to Canadians who donated to the Ice Bucket Challenge, to our ALS Society partners across the country and to Brain Canada and the federal government’s Canada Brain Research Fund for making this research investment possible.”

“Brain Canada’s partnership with ALS Canada has enabled greater investment in ALS research, which will in turn accelerate progress towards the development of effective treatments,” said Inez Jabalpurwala, President and CEO, Brain Canada Foundation. “In addition, the discoveries that will result from this research funding have the potential to inform how we approach other neurodegenerative diseases with similar underlying mechanisms.”

The nine projects include 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 – and seven smaller studies that enable investigators to explore out-of-the-box research.

“Five years ago, the breadth of ALS research we are funding today would not have been possible simply because we didn’t know enough about the disease to be able to ask the kinds of questions that today’s researchers are investigating in their work,” said Dr. David Taylor, Vice President of Research at ALS Canada. “The fact that we now have the ability to explore ALS from different angles reflects the growing body of knowledge about the disease and the increasing likelihood of effective treatments being developed.”

A research team led by Dr. Guy Rouleau of McGill University and the Montreal Neurological Institute has been awarded $2.2 million to study motor neurons and astrocytes created from people living with different forms of ALS via stem cell technology. Dr. Rouleau and his team, which includes other collaborators at McGill University and the Montreal Neurological Institute as well as Université de Montréal and Université Laval, will study the biology of these stem cells to determine if their characteristics in the laboratory can represent different forms of human disease and further develop them as a potential screening mechanism for therapeutics. The tools and tests created in this project will be valuable for both Canadian and global ALS researchers as new resources to understand the disease and find new ways to treat it.

A research team led by Dr. Janice Robertson of University of Toronto has been awarded $1.6 million to understand whether the most common genetic abnormality in ALS, which occurs in the C90RF72 gene, causes or contributes to the disease through a loss of the gene’s normal biological function. The majority of the research community is focusing on how the genetic abnormality in C9ORF72 might lead to an extra, toxic function, but in this five-year study, the team – which includes other collaborators at the University of Toronto as well as Sunnybrook Health Sciences Centre, McGill University and the Montreal Neurological Institute, and the University of British Columbia – will comprehensively analyze the potential damage to motor neurons lacking C9ORF72, and examine if both loss and gain of function mechanisms combine to cause ALS. This knowledge could fundamentally alter how therapeutics are developed for common forms of ALS as well as frontotemporal dementia (FTD), which often occurs with ALS.

Other projects that have been awarded $100,000 each in funding are:

• Dr. Gary Armstrong at the Montreal Neurological Institute and McGill University is using a state-of-the-art technique in genetic manipulation to create new zebrafish models of ALS for the most prominent genetic cause of the disease, which relates to mutations in the C9ORF72 gene.
• Dr. Neil Cashman at the University of British Columbia is using a unique fruit fly model to study whether a key toxic ALS protein can leap between neurons to explain spread of disease throughout the body.
• Dr. Charles Krieger at Simon Fraser University is studying a substance called adducin that is critically linked to health at the site of connection between motor neurons and muscle, in order to understand whether this substance might represent a target for treatment to slow the progression of ALS.
• Dr. Éric Lécuyer at Université de Montréal is using a unique set of scientific tools to comprehensively analyze the contents of key structures in ALS called stress granules.
• Dr. Marlene Oeffinger at the Institut de recherches cliniques de Montréal is studying structures called paraspeckles to understand their content and how they function, as well as how they are altered in neuronal cells that have ALS-causing mutations.
• Dr. Alex Parker at the Université de Montreal is undertaking a study to understand how probiotics slow down the progression of ALS symptoms in worms.
• Dr. Lisa Topolnik at the Centre Hospitalier de l’Université Laval will study how certain neurons called interneurons, which connect to motor neurons in the brain, might be implicated in the early stages of ALS.

All of the research projects were selected through a competitive peer review process, regarded as the international benchmark of excellence in assessing projects for research funding. The peer review process engages a panel of international experts in ALS and other neurodegenerative diseases in evaluating and ranking all proposed research projects based on their scientific merit and on the potential to most quickly advance the field of ALS research in order to develop effective treatments. All aspects of the peer review process are executed in full partnership with Brain Canada, whose funds are provided through a partnership with Health Canada known as the Canada Brain Research Fund.

Approximately 1,000 Canadians are diagnosed with ALS each year. At any time, there are approximately 2,500 to 3,000 people living with the disease in Canada, and the average cost of caring for one person with ALS is between $150,000 and $250,000. Every day, two to three Canadians will die of ALS.

About Canada’s ALS Societies
ALS Societies across Canada fundraise on a regional basis to provide services and support to people and families living with ALS and to contribute to the funding of the ALS Canada Research Program. The ALS Canada Research Program funds peer-reviewed research grants and fosters collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. ALS Societies advocate federally, provincially and locally on behalf of people and families living with ALS for better government support and access within the healthcare system.

About Brain Canada and the Canada Brain Research Fund
Brain Canada is a national non-profit organization headquartered in Montreal, Quebec, that enables and supports excellent, innovative, paradigm-changing brain research in Canada. For more than one decade, Brain Canada has made the case for the brain as a single, complex system with commonalities across the range of neurological disorders, mental illnesses and addictions, brain and spinal cord injuries. Looking at the brain as one system has underscored the need for increased collaboration across disciplines and institutions, and a smarter way to invest in brain research that is focused on outcomes that will benefit patients and families. Brain Canada’s vision is to understand the brain, in health and illness, to improve lives and achieve societal impact.

The Canada Brain Research Fund is a public-private partnership between the Government of Canada and Brain Canada, designed to encourage Canadians to increase their support of brain research, and maximize the impact and efficiency of those investments. Brain Canada and its partners have committed to raising $120 million, which is being matched by Health Canada on a 1:1 basis for a total of $240 million. For more information, visit www.braincanada.ca.