ALS Canada’s work is empowered by community. Discover how, in 2023, our collaboration with clinicians and investments in research aims to enhance care and the potential for future treatments.
CALS Research Network: Connecting Canada’s clinicians and researchers
As a national convenor of the ALS community, ALS Canada was proud to provide the foundational funding to establish the Canadian ALS Research Network (CALS) in 2008. The network was established to formally unite clinician researchers and to demonstrate to the pharmaceutical industry the benefits of bringing clinical trials to the country.
Recognizing the significance and effectiveness of CALS in uniting clinicians in Canada to accelerate research and improve care for people affected by ALS and their families, ALS Canada assumed administrative management of the network in 2017.
“CALS informs all areas of our mission as a trusted source the ALS community can rely on,” says Colleen Doyle, Senior Manager of Research and CALS at ALS Canada. “These are the experts doing the work in our communities, whether in a clinical setting or within the lab, working to advance what we know about the disease and potential treatments.”
Over the past five years, CALS has grown significantly, doubling its membership and extending its reach across Canada. This growth has strengthened its ability to collaborate effectively as a network, providing opportunities to mentor early career clinicians, partner more closely with pharmaceutical companies to bring promising clinical trials to Canada, and support grassroots research efforts led by physicians. Since its inception, more than 35 ALS clinical trials have taken place at CALS centres across the country.
These efforts have helped develop resources to assist people living with ALS, clinicians, and allied health professionals. This includes ReferALS, designed to help general neurologists recognize ALS symptoms earlier and refer potential cases to a CALS clinic. By speeding up the diagnosis process, ReferALS ensures quicker access to vital care, approved treatments, and the possibility of participating in clinical trials, all of which can make a significant difference in slowing down the progression of the disease and enhancing the quality of life.
In 2023, ALS Canada surveyed CALS members to gain insights into their communities’ support and healthcare services. Thanks to the collaborative nature of its membership, the survey had a high response rate and will help identify gaps and barriers faced by people living with ALS. With this valuable data, ALS Canada and our partners are better equipped to advocate government for improvements and ensure equitable access to care for everyone affected by ALS.
Drawn to the mysteries of ALS research
It was the mystery surrounding the disease that drew Dr. Alex Parker to ALS research. Since his grad school days, he has had a deep interest in neurodegenerative diseases, their onset, progression of symptoms, and their variation between each person diagnosed.
To help solve this mystery, Dr. Parker’s team at the Department of Neuroscience at the Centre de recherche du CHUM at Université de Montréal is investigating the microbiome, a natural collection of bacteria and other microbes that play a crucial role in maintaining our health, including possibly our brain and spinal cord. The team has developed simple ALS models using worms to better understand how motor neurons degenerate and explore whether
Thanks to the support of the ALS Canada Research Program, in partnership with Brain Canada, the team has made significant progress in its research. Investigating the effects of probiotics has the potential to lead to new ALS therapies, and this area of study has successfully led to clinical trials for other diseases. In Dr. Parker’s lab, certain probiotics have been found to be protective in the ALS models, one of which will be tested in an upcoming clinical trial. These trials could provide promising new clues to unlocking the mysteries of this terrible disease.
“Although I spend most of my time in the lab, I know that figuring out ALS is more than an academic exercise. It is a race against time for people living with the disease,” says Dr. Parker. “The speed at which ALS progresses can be fast, and it’s almost always devastating, so I appreciate that the ALS community needs answers as soon as possible.”
2, 987 pieces of equipment that improve quality of life were delivered free of charge
The first 200 Canadian DNA profiles (of a target of 1,000) were contributed to Project MinE with funding from ALS Canada and matching funds from Brain Canada