ALS Action Canada

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

During National Volunteer Week, we’re recognizing the volunteers helping drive progress toward ending ALS.Chris May spen...
04/20/2026

During National Volunteer Week, we’re recognizing the volunteers helping drive progress toward ending ALS.

Chris May spent his career navigating government and shaping policy. Today, he’s using that experience in a new way.

After being diagnosed with ALS, Chris joined ALS Action Canada’s Advocacy Committee – bringing both lived experience and deep knowledge of how systems work.

From raising funds in his community to building awareness and pushing for change, his focus is clear: action.

“It’s about raising funds, but also raising awareness. The more concerned the public is, the more likely it is that government will act – and that’s how change happens.”

Read his story at the link in bio. [https://www.alsactioncanada.org/volunteer-spotlight-turning-advocacy-into-action/]

We’re proud to recognize leadership within the ALS community. Darryl Borsato, Board Director with ALS Action Canada, has...
04/17/2026

We’re proud to recognize leadership within the ALS community.

Darryl Borsato, Board Director with ALS Action Canada, has been awarded the Dr. Andrew Eisen Leadership Award by ALS Society of British Columbia.

Presented at ALS BC’s recent annual awards ceremony, this honour recognizes outstanding leadership and impact within the ALS community.

Through his continued commitment to advancing awareness and supporting others affected by ALS, Darryl is helping drive progress where it matters most.

Congratulations, Darryl, on this well-deserved recognition. You can read more about Darryl’s story at the link in our bio.

Expanding Independence Through Brain-Computer Interface InnovationSynchron is a neurotechnology company working to expan...
04/15/2026

Expanding Independence Through Brain-Computer Interface Innovation

Synchron is a neurotechnology company working to expand independence for people living with ALS in Canada.

The organization is developing an implantable brain-computer interface (BCI) – a device designed to translate brain signals into digital commands, allowing users to control technology without relying on hands, voice, or eye movement.

Synchron aims to work alongside the ALS community to help shape the future of this therapy. Its BCI Community is a place where individuals living with ALS and caregivers can learn more, stay informed, and share perspectives that guide development.

To learn more about joining the Synchron BCI Community, click the link in bio. (https://synchronbci.com/)

You can also watch a video to learn more about Synchron’s mission and approach.

Missed it? No worries! You can now watch Courage to Fight: A movement to end ALS on Charitable Impact’s YouTube channel....
04/11/2026

Missed it? No worries! You can now watch Courage to Fight: A movement to end ALS on Charitable Impact’s YouTube channel. 🙌

Hear from Louis Del Re, a person living with ALS who has channelled his diagnosis into fundraising for the cause, and Leigh Naturkach, Executive Director of ALS Action Canada and Cause Leader of the ALS Super Fund, as they share what courage looks like up close.

The conversation was powerful. The Q&A brought even more. Watch it now. Link in bio. 💛

Thank you for being part of it.We’re grateful to our partners at Amsterdam Brewing Company and to everyone who showed up...
03/23/2026

Thank you for being part of it.

We’re grateful to our partners at Amsterdam Brewing Company and to everyone who showed up, raised a glass, and supported the ALS community during the Amsterdam St. Patrick’s Day Festival.

From Ales for ALS™️ to featured menu items and tap-to-donate, this partnership brought people together in meaningful ways to help advance ALS research and amplify the patient voice.

The limited-edition Ales for ALS™️ stout is still available for those who want to continue supporting the cause.

This is just the beginning. We look forward to continuing this partnership throughout the year, with more opportunities to engage the community and drive progress against ALS.

St. Patrick’s Day, Shared CauseOn Saturday, March 14, some of our ALS community came together at in Toronto as part of ...
03/17/2026

St. Patrick’s Day, Shared Cause

On Saturday, March 14, some of our ALS community came together at in Toronto as part of Amsterdam’s St. Patrick’s Day Festival – an incredible show of support for our new partnership and those impacted by ALS. 🍀🍺

From music and great food to the release of A Legendary Stout brewed for the Ales for ALS™️ campaign, the event was a powerful reminder of what’s possible when people rally behind a shared cause.

The Festival continues through March 23, with more opportunities to join in, show your support, and raise awareness for ALS.

We’re deeply grateful to our friends at , event attendees, and everyone who raised a glass, shared a story, or contributed to the cause.

Purchase the beer & learn more about the partnership (🔗Link in Bio)

A lot has changed since the last time Canada measured the true cost of ALS.In 2014, the financial and social impact of l...
03/17/2026

A lot has changed since the last time Canada measured the true cost of ALS.

In 2014, the financial and social impact of living with ALS in Canada was studied for the first time. Today, ALS Canada has launched a new nationwide survey to better understand the realities people affected by ALS are facing today. The findings will help build the evidence needed to advocate for better funding, programs, and care across the country.

If you are living with ALS, a caregiver, or a recently bereaved caregiver (within the last 6 months), your experience can help ensure the realities of ALS in Canada are properly understood.

The survey is anonymous, confidential, and takes about 10–20 minutes to complete.

The strength of this study depends on broad participation from across the country – the more voices included, the stronger the evidence for change.

Take the survey: https://legeropinion.co/2026-Cost-of-ALS 🔗Link in Bio

Please also consider sharing this with others in the ALS community so their experiences can be included.

PatientVoices

“I sometimes maybe exaggerate a little too much how well I’m doing when I’m not really, just to give people permission t...
03/05/2026

“I sometimes maybe exaggerate a little too much how well I’m doing when I’m not really, just to give people permission to engage. You wouldn’t know that I can barely brush my teeth anymore.”

When Rick Zwiep was diagnosed with ALS in August 2022, he chose connection over silence.
At ALS Action Canada and the ALS Super Fund, we are proud to stand alongside Rick, not just as a member of our community, but as a leader. Rick serves on our Board of Directors at ALS Action Canada, leads our ALS Community group, and sits on the ALS Super Fund’s Advisory Council, ensuring patient voices help guide how donated dollars are invested across the country.

This is what a patient-led movement looks like. Science is shaped by lived experience. Research driven by urgency. Support grounded in understanding.

Thank you to the originALS: more than ALS podcast and hosts Flynn Mason and Hayley King for featuring Rick’s story and our work. Check out more of their episodes to hear more voices from the ALS community at the link in our bio.

Accessibility

With February 28 as Rare Disease Day and as a proud member of the Canadian Organization for Rare Disorders (CORD), we’re...
02/27/2026

With February 28 as Rare Disease Day and as a proud member of the Canadian Organization for Rare Disorders (CORD), we’re pleased to spotlight two initiatives.

First, the Rare Disease Day 2026 Webinar: Accelerated Access Today, Demonstrating Value for 2026 and Beyond 💙

This 1-hour session celebrates the first 1.5 years of Canada’s Rare Disease Drug Strategy (RDDS), highlighting concrete progress in 2025, emerging access pathways, and the policy choices needed to sustain and expand impact for people living with rare diseases.

The webinar also spotlights four successful initiatives from 2025, followed by a forward-looking panel discussion on extending RDDS into 2026 and exploring FAST-style pathways for rare cancers and other rare diseases to help accelerate access.

Missed it? The full recording will be available on CORD’s YouTube channel. Stay tuned and be sure to follow along. 🎥

Next, CORD’s annual Rare Disease Day Conference is taking place April 29-30 in Toronto. You can learn more at https://www.raredisorders.ca/events/upcoming-events.

Thank you to CORD’s leadership in helping define the future of rare disease access in Canada.

This February, we’re celebrating the love, generosity, and hope that fuel our ALS community – from donors, caregivers, a...
02/13/2026

This February, we’re celebrating the love, generosity, and hope that fuel our ALS community – from donors, caregivers, and advocates who continue to show up in meaningful ways.

One powerful example is Sabrina Baker, Chief Changemaker & Founder of Blonde Ambition. Motivated by her father’s ALS diagnosis, Sabrina created the Holding on to Hope collection in support of ALS causes. The collection reflects her ongoing commitment to honour her father’s legacy while helping create greater awareness, funding, and hope for people living with ALS and their families.

“The reality is, ALS needs more. More funding, more research, more hope. This collection is our way of continuing to advocate and raise money for ALS patients and their families, and to do my part to create hope in my dad’s memory. ALS and being a caregiver have forever changed me. I have learned that not a moment is to be taken for granted, to enjoy the little things, cherish those quiet moments, and to LIVE. Spend every day doing what makes you happy, and nothing less.”

We’re honoured to feature Sabrina this February and to share her story of love in action.

Learn more about the collection at blondeambition.ca

At the end of 2025, Jake Thompson, Co-Founder of Bumpy Road Productions, created a short video to share with his family ...
02/11/2026

At the end of 2025, Jake Thompson, Co-Founder of Bumpy Road Productions, created a short video to share with his family and friends – a personal reflection on living with ALS, connection, and hope. What he didn’t expect was how widely it would resonate. The video has since reached over 16,000 people, reminding us how powerful real stories can be.

Jake’s video is a beautiful example of how lived experience can create understanding, comfort, and connection – not just for those living with ALS, but for friends, families, and anyone trying to better understand this disease.

We’re grateful to Jake for his joining as a Member of ALS Action Canada, and for sharing his voice and helping shine a light on the human side of ALS.

Watch the full video at the link in our bio. https://www.youtube.com/watch?v=AHYDhIDrHV4 Follow Jake at for more.

Honouring Börje Salming. Fueling the courage to fight ALS. Thank you to the Toronto Maple Leafs for honouring the life a...
01/28/2026

Honouring Börje Salming. Fueling the courage to fight ALS.

Thank you to the Toronto Maple Leafs for honouring the life and legacy of Börje Salming and for donating all net proceeds from the Börje Salming commemorative jersey patch to ALS Action Canada.

This generous support advances patient-led advocacy, access to promising therapies, and more ALS clinical trials across Canada – helping move us closer to a future without ALS.

Available for a limited time while supplies last. Link in bio to learn more.

(https://shop.realsports.ca/products/maple-leafs-salming-commemorative-jersey-patch-blue)

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