ALS Action Canada

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ALS Action Canada A Canadian patient-led movement fighting to forever. Join us! Charitable organization BN: 791367204 RR 0001

Congratulations to Ryan Ferguson (Ryan Ferguson) and the entire Forefest team on a successful 2026 Forefest Charity Golf...
10/19/2026

Congratulations to Ryan Ferguson (Ryan Ferguson) and the entire Forefest team on a successful 2026 Forefest Charity Golf Scramble!

The event brought together golfers, sponsors, volunteers and supporters for a great day on the course, raising more than $26,000 in support of the ALS Super Fund!

A special acknowledgement to Biogen for its Premier support of this year’s event.

Events like Forefest demonstrate the power of community-led fundraising and the difference individuals can make in supporting people affected by ALS.

Thank you to everyone who contributed to making the day a success!

Congratulations to Ryan Ferguson (Ryan Ferguson) and the entire Forefest team on a successful 2026 Forefest Charity Golf...
10/19/2026

Congratulations to Ryan Ferguson (Ryan Ferguson) and the entire Forefest team on a successful 2026 Forefest Charity Golf Scramble!

The event brought together golfers, sponsors, volunteers and supporters for a great day on the course, raising more than $26,000 in support of the ALS Super Fund!

A special acknowledgement to Biogen for its Premier support of this year’s event.

Events like Forefest demonstrate the power of community-led fundraising and the difference individuals can make in supporting people affected by ALS.

Thank you to everyone who contributed to making the day a success!

For years, ALS Action Canada has been advocating for changes to restrictive drug reimbursement criteria that can limit a...
10/16/2026

For years, ALS Action Canada has been advocating for changes to restrictive drug reimbursement criteria that can limit access to ALS treatments.

Our focused and persistent efforts have included more than 10 submissions and six meetings with Canada’s Drug Agency (CDA), including its CEO, all driven from the patient and caregiver perspectives.

Most recently, ALS Action Canada members Cali Orsulak, Rick Zwiep and Dr. Andrew Darke brought patient and caregiver voices, lived experience and expertise to CDA’s ALS in Focus initiative, participating in meetings and providing extensive feedback on draft reports.

While the initiative has brought important information to light, a critical issue remains: CDA’s own role in developing the reimbursement criteria that determine who can access treatments.

We’re continuing to advocate for meaningful changes in the way these criteria are developed, including a greater role for expert neurologists in CDA’s procedures.

This is the focused, persistent, patient-driven advocacy at the heart of ALS Action Canada.

Read more about our direct advocacy work with Canada’s Drug Agency (CDA) through the link in our bio.

[https://www.alsactioncanada.org/category/advocacy/]

A new paper published in Canadian Health Policy Journal explores how changes to U.S. drug pricing policies could affect ...
10/15/2026

A new paper published in Canadian Health Policy Journal explores how changes to U.S. drug pricing policies could affect Canada’s access to innovative medicines.

Written by Dr. Nigel Rawson, the paper examines how these policies interact with Canada’s existing drug approval, pricing and reimbursement processes.

Dr. Andrew Darke, a Member of ALS Action Canada’s Advocacy Committee, provided input on earlier drafts and is acknowledged in the publication.

While the implications for ALS treatments may take time to emerge, the issue raises important questions about timely access to new therapies for Canadians living with ALS.

Read the article at the link in our bio.



[https://canadianhealthpolicy.com/canadians-access-to-innovative-medicines-is-already-limited-trumps-trade-war-will-make-it-worse/]

For people living with ALS, access to promising new treatments is urgent. But how do we balance that urgency with the ne...
10/14/2026

For people living with ALS, access to promising new treatments is urgent. But how do we balance that urgency with the need for strong scientific evidence?

In a response published in Neurology, Dr. Andrew Darke, a Member of ALS Action Canada’s Advocacy Committee, shares a patient perspective on this important question.

Andrew discusses the example of Albrioza and explores how well-designed Phase 2 clinical trials can inform decisions about expedited or conditional approval of new therapies.

It’s an important contribution to the ongoing conversation about scientific rigour, uncertainty and timely access to ALS treatments.

Read Andrew’s response by using the link in our bio.

We’re cheering you on, Amanda and Spencer! This Sunday, ALS Action Canada Member Amanda Tam and her husband, Spencer Lev...
10/08/2026

We’re cheering you on, Amanda and Spencer!

This Sunday, ALS Action Canada Member Amanda Tam and her husband, Spencer Levine, will take on the 42.2 km Montreal Marathon together, with Spencer pushing Amanda in a specialized running chair and Amanda wearing the race bib.

The marathon marks a significant milestone — five years since Amanda’s ALS diagnosis. It is also a celebration of resilience, partnership and continuing to live fully with ALS.

Amanda and Spencer are also using this incredible challenge to raise funds in support of Société de la SLA du Québec and the ALS community in Quebec.

As Amanda and Spencer get ready for race day, our Executive Director Leigh Naturkach has a special message for them.

We’ll be cheering you on every kilometre of the way!

10/06/2026

New research is raising important questions about the connection between military service and ALS.

A recent report highlights research showing that military veterans are twice as likely to develop ALS, underscoring just how much we still need to understand about this devastating disease and the factors that may contribute to its development.

Veterans deserve answers. People living with ALS deserve better treatments. And every Canadian affected by ALS deserves progress

That is why ALS Action Canada is proud to stand alongside our partners in the Canadian Collaboration to Cure ALS, calling on the federal government to invest $50 million over five years to strengthen and scale Canada’s ALS research efforts.

This investment would help advance critical research, improve access to clinical trials, strengthen national data collection, and bring us closer to understanding why ALS develops and how we can treat and ultimately cure it.

We are looking forward to returning to Ottawa for Hill Day on October 26-27, where members of the Canadian Collaboration will come together to continue with our call to action to federal decision-makers.

The message is clear: Canada must invest in ALS research now.

Because the answers cannot wait. And neither can the people and families living with ALS.

Gear up for change! This weekend, members of our ALS community will be getting on their bikes and taking part in the 202...
10/02/2026

Gear up for change!

This weekend, members of our ALS community will be getting on their bikes and taking part in the 2026 Revolution Ride. Community and collaboration are core to who we are, and we support the many ways that members give back.

To everyone riding, fundraising, volunteering, supporting a loved one, or showing up for the ALS community – we’re cheering you on!

Events like this are another reminder of the incredible determination and generosity of people across the ALS community who continue to raise awareness, support families and push for progress.

To all those taking part on October 4: have a a safe and amazing ride. We’ll be cheering you on every kilometre of the way!

NEWS: Ulefnersen has met its primary endpoint in the Phase 3 FUSION trial, showing a statistically significant benefit i...
09/23/2026

NEWS: Ulefnersen has met its primary endpoint in the Phase 3 FUSION trial, showing a statistically significant benefit in function and survival for people living with FUS-ALS compared with placebo.

Read the full article in the link in our bio.

Let’s Take Action for Connected CarePeople living with ALS and their families often navigate complex care across neurolo...
09/17/2026

Let’s Take Action for Connected Care

People living with ALS and their families often navigate complex care across neurologists, respirologists, physiotherapists, home care providers and more. When health information is fragmented across disconnected systems, critical information may not be available to the right provider when it matters most.

Bill S-5, the Connected Care for Canadians Act, would require health technology companies to adopt common standards for sharing health information and help prevent patient information from being locked away in disconnected systems.

The bill has been 25 years in the making. While it did not pass before the House of Commons rose for summer recess, advocacy efforts are continuing to build momentum ahead of the fall.

Standing alongside the Canadian Medical Association, we’re encouraging the ALS community to take action by writing to your local MP. It takes less than two minutes, and every letter helps demonstrate the importance of moving this legislation forward.

Add your voice and contact your MP today.

The English and French letter-writing tools can both be found through the links in our bio.

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Edmonton, AB

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