Ottawa, October 02, 2025 (Globe Newswire) – today people living with lateral sclerosis of amyotrophic sclerosis (ALS), persons, clinicians, researchers and defenders from all over Canada are gathering together on a parliamentary hill with a clear message: without urgent federal investments in the study, Canada, with diagnosis, universal, unique To get a unique window, while a unique window, while a unique window, while in general, although uniquely unique, so that they were due to the fact that in accordance with the line, although unique, so that they are due to the fact that as a unique window. Generation of the procedure.
In Canada, people living with bass are faced with significant obstacles to participate in clinical trials and research, which can expand our understanding of the disease and accelerate the development of treatment methods. These barriers are especially sharp for Canadians in rural, northern and insufficiently serviced regions. This inequality is not associated with the lack of experience or infrastructure, but inability to scale the world -class research initiatives without the support of the federal government.
Almost 4,000 Canadians live with BAS, also known as the disease of La Gorig, which is a fast -gas and deadly disease. This gradually removes the person’s ability to speak, walk, eat, swallow and ultimately breathe, in most cases for two to five years death for two to five years. There are several available procedures, and there is no medicine. While such countries as the United States, Australia and the United Kingdom, invested significant funds in the study of ALS, Canada did not keep up with.
Many Canadians living with the BAS turn to American research capabilities and clinical trials, which is a lost opportunity for Canada. Personal data on healthcare, collected abroad, are inaccessible to Canadian researchers and are vulnerable to a reduction in foreign financing, which slows down progress in research and is at risk of Canadians.
“Canada has the talent and world class infrastructure to provide research opportunities throughout the country, but there is no federal leadership,” said Tammy Moore, general director Society of Als Canada. “Every day without investment is a day lost for people and families that the bass faces. Canadians have already invested, and we need the federal government to act now, so their efforts pay off. We are talking about ensuring data here, at home, expanding access to clinical trials for all Canadians with bass and accelerating the search for treatment, which urgently need today and for the future. ”
The ALS community calls for federal investments in the amount of $ 50 million for five years to support Canadian cooperation for the treatment of ALS. This national strategy will unite and scale three initiatives that are already moving throughout the country:
- Capture (complex platform for analysis, to understand, fix and eliminate) ALS -Lorobally cooperating Pan-Canadian open platform, collecting clinical data, visualization, genomics and biological dishes to reveal why ALS affects people differently. In investments, it can expand from four to 12 sites throughout the country, stimulate the opening of a critical biomarker and rely on Canada’s leadership in Als research.
- Canadian register of nervous diseases (CNDR) -Nal register, which follows people living with the BAS from the diagnosis, collecting real data to improve medical care, access to testing and sending policies. Federal investments guarantee that each Canadian with BAS can register, generate evidence of access to drugs and support Canadian data sovereignty.
- Canadian research network ALS (CALS) – A network of clinicians throughout Canada, which attracts and conducts global clinical trials. With investments, CALS can expand access to the test for new regions, so people in rural and remote communities can access experimental therapy closer to the house. Investments will significantly strengthen Canada’s leadership in providing new methods of treatment for people living with bass during unprecedented possibilities.
For people living with bass, every day matters.
“ALS is an inexorable disease with rapid progression and destructive results, but we are still far from the medicine. Time is not on our side, ”said Fei Murphy, Ambassador of Als Canada Community, diagnosed with ALS in 2024. – without research, ALS remains a fatal offer; At the same time, we can move to make Alsable Behenes. We will not have a voice that in ALS, why ARS, nothing more, has so long that in ALS.
More than 40 delegates from all over Canada are found today with members of parliament and senators to defend these investments. Lawyers say the choice is crucial. Canada should rise now to ensure Als research, accelerate progress and lead all over the world, or it will lag behind while Canadians continue to die without options.
About the bass and society of Als Canada
Amiotrophic lateral sclerosis (ALS) is a non -consulting and currently terminal disease. It gradually paralyzes people, because the brain can no longer communicate with the muscles of the body, which we usually can move at will. Over time, when the body muscles are destroyed, someone living with the bass will lose the ability to walk, speak, eat, swallow and ultimately breathe. Almost 4000 Canadians live with bass, and approximately 1000 Canadians are diagnosed every year. Four out of five people living with bass will die for two to five years after their diagnosis.
Als of Canada is working to change what it means to live with the bass. Founded and informed by the Canadian community of ALS, we respond to an urgent unsatisfied need to change the life of treatment methods, investing in high -quality studies that will stimulate scientific discoveries and attracting industry, supporting the increase in clinical capabilities and advocating fair, affordable and timely prey to read.
Responding to a huge need for the current and trustworthy knowledge, awareness and education of ALS, we expand the capabilities of Canadians affected by ALS for navigation on the current realities of the BAS, to be informed consumers of ALS information and effectively advocate changes. In Ontario, we provide direct public services to help people navigate Als.
Founded in 1977, ALS Canada is a registered charitable organization, whose work is equipped with generous donors that share our vision of the world free from ALS.
Join the conversation and communicate with the Als online community. Find Als Canada on XIN Instagramor as our page on FacebookVisit the field als.ca To find out more.
To obtain additional information
Canadian Society Als
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