ALS Canada urges you to raise your hand in support of continuing to build Canada as a primary destination for ALS clinical trials


Toronto – The ALS Society of Canada (ALS Canada) joins the global ALS community in recognizing June as ALS Awareness Month. More than 3,000 Canadians live with amyotrophic lateral sclerosis (ALS), a neuromuscular disease that paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. People with ALS face a progressive and devastatingly swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us.

Increasingly, there is more hope for people given an ALS diagnosis. There are two disease-modifying therapies available in Canada and at least two more going through the Health Canada approval and reimbursement process, but there is much work to be done to ensure equitable, affordable, and timely access to more available treatment options for all Canadians living with ALS. With an acceleration in therapeutic development, clinical trials are an important aspect of access, ALS Canada asks you to raise your hand in support of continuing to build Canada as a primary destination for ALS clinical trials.

“ALS takes people far too quickly. With no cure, the ALS community has no choice but to measure time not by months or years but by loss – loss of function and loss of life,” said Tammy Moore, CEO, ALS Canada. “But progress has been made, and there are more opportunities for therapeutic development than ever before. That is why we’re asking the public to come together and share their support for strengthening Canada as home to the type of clinical research needed to develop new treatment options for people living with ALS. This demonstration of support for the community will make a difference as we advocate to industry and make investments to build capacity across Canada.”

For people affected by ALS, clinical trials in Canada mean hope and the chance to participate in potentially cutting-edge therapies. Building capacity nationwide will enhance opportunities for all Canadians to have equitable access to the most promising experimental and proven ALS treatments available. To support this, ALS Canada will continue to:

  • Establish early relationships with industry who are invested in development of new treatments through clinical trials and strive to continually keep Canada on every company’s radar;
  • Provide administrative support for the Canadian ALS Research Network (CALS) as a coordinated group of ALS clinics across Canada to ensure readiness for clinical trials;
  • Build strategic relationships and foster collaboration amongst researchers, clinicians, and industry;
  • Build clinical capacity and clinical trial readiness by funding research and grants across the country through the ALS Canada Research Program, including Clinical Research Fellowships;
  • Be a source of information for Canadians about drug development through to access of approved therapies, to empower people to make informed decisions and advocate for access to treatments.

Show your support by adding your name (English only) to the growing list of Canadians who believe in more opportunities to participate in ALS research and desire to see Canada as a “must-have” destination for industry in their future trials.

To learn more about ALS clinical trials in Canada and what it means to take part in ALS research, tune in to a live webinar on Global ALS Awareness Day on June 21 at 12pm ET. Register now!

Throughout the month of June, ALS Canada will also host the Walk to End ALS in more than 20 locations across Ontario and virtually for those who cannot attend an in-person event. The ALS Canada Walk to End ALS is the largest volunteer-led fundraiser for the organization, uniting Canadians in their desire to put an end to ALS. Proceeds from the Walk to End ALS enable ALS Canada to provide services and support for people living with ALS in Ontario, and to ensure a strong pipeline of funding for the best of Canadian ALS research. For more information visit walktoendals.ca.

In addition, ALS Canada will recognize Lou Gehrig Day on June 2, alongside Major League Baseball and the Toronto Blue Jays who are set to play the Chicago White Sox in Toronto. Read more about the day by visiting als.ca/get-involved/lou-gehrig-day/.

“More than 1,000 Canadians are diagnosed with ALS each year – that’s 2 to 3 people a day who are delivered this devastating news that will tragically take their life and have an enduring impact on their family,” said Tammy. “We hope to build awareness for this disease throughout June and beyond to help us raise critical funds to allow us to invest in vital research and advocate for people living with ALS and their families.”

About ALS and the ALS Society of Canada
Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. More than 3,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.

The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable and timely access to proven therapies.

Responding to the tremendous need for current and credible ALS knowledge, awareness and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.

Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a future without ALS.

Join the conversation and connect with the ALS community online. Find ALS Canada on Twitter, Instagram, or like our page on Facebook.

For more information
ALS Society of Canada
media@als.ca
437-703-5440

Posted in: Advocacy