ALS Action Canada

06/13/2026

In case you missed it: the Canadian Rare Disease Network recently submitted a response to Health Canada’s consultation on clinical trial regulations, contributing perspectives to help ensure the realities of rare disease are considered in the future of research and access in Canada.

At ALS Action Canada, we know meaningful progress happens when patients, caregivers, researchers, clinicians, and organizations work together to strengthen the rare disease landscape.

“At CRDN, we believe progress in rare disease depends on strong coordination across research, care, policy, and patient communities. Thoughtful modernization of Canada’s clinical trial framework is one important part of making innovation more responsive to the realities and needs of people living with rare diseases.” – Canadian Rare Disease Network (CRDN)

We encourage our community to learn more about the work of the Canadian Rare Disease Network and stay informed about developments across Canada’s rare disease ecosystem.

Read more: [https://canadianrdn.ca/crdn-submits-response-to-health-canadas-consultation-on-clinical-trial-regulations/]

06/11/2026

Partnerships help create space for awareness, connection, fundraising, and community action around ALS.

Thank you to Emi Nunez and the team at for continuing to support ALS Action Canada and the ALS community this ALS Awareness Month.

Fuel Courage. Support patient-led advocacy, awareness, and research: [https://my.charitableimpact.com/send/to/group/als-super-fund-together-we-endals/new]

06/10/2026

Researchers, clinicians, and academics in the ALS community have an opportunity to help shape the future of ALS research in Canada.

CAPTURE ALS is launching its next phase, CAPTURE ALS 2.0, and is seeking new members to join its Executive Committee, Scientific Committee, and Advisory Board.

Building on a national research platform dedicated to understanding ALS, developing biomarkers, and advancing translational research, CAPTURE ALS 2.0 will help drive the next generation of discoveries and collaboration across Canada.

Applications are open until August 30, 2026.
To learn more or express your interest, contact Sophie Dahan at [email protected].

06/09/2026

Community drives action.

ALS Action Canada and Amsterdam Brewing are proud to stand together in a year-round partnership focused on raising awareness, amplifying ALS voices, and helping drive urgently needed action for the ALS community.

Through initiatives including Ales for ALS, community activations, fundraising efforts, and awareness campaigns, this partnership helps bring people together around the realities and urgency of ALS.

Thank you to Emi Nunez and the team at for continuing to stand alongside the ALS community this ALS Awareness Month.

Fuel Courage. Support patient-led advocacy, awareness, and research: [https://my.charitableimpact.com/send/to/group/als-super-fund-together-we-endals/new]

06/08/2026

As we recognize ALS Awareness Month, we’re reflecting on the incredible communities, families, and individuals helping drive awareness, advocacy, and action across Canada.

Last month, the Del Re family once again brought the community together through the third annual Keep On Buzzin’ in honour of Louis Del Re, Emily Robinson, with some proceeds toward the ALS Super Fund.

Nearly 1,000 people came together in support of the ALS community, helping make this year’s event an incredible success.

From the volunteers, donors, sponsors, NHL alumni, and community members who attended, bid in the auctions, participated in the raffles and 50-50 draws, and supported the evening in so many ways – the event was a reflection of the strength and generosity of the ALS community.

Together, nearly $160K was raised, with a significant portion supporting the ALS Super Fund and helping advance advocacy, awareness, and investment in ALS research and care.

This is the impact of community action.
Learn more about the ALS Super Fund through the link in our bio.

06/05/2026

Thank you, Amanda Tam (), for continuing to share your experience and perspective with our community this ALS Awareness Month. This is part 2 of 3 of Amanda’s story.

Fuel Courage. Support patient-led advocacy, awareness, and research: [https://my.charitableimpact.com/send/to/group/als-super-fund-together-we-endals/new]

06/05/2026

Interested in helping shape the future of rare disease advocacy in Canada?

The Canadian Organization for Rare Disorders (CORD) is currently accepting nominations for its 2026–2029 Board of Directors. As a proud member of CORD, ALS Action Canada encourages qualified individuals to consider this opportunity to help advance the rare disease community nationwide.

Applications close June 30, 2026.

For details and eligibility requirements, visit .

06/04/2026

Thank you, Amanda Tam (), for sharing your voice and perspective with our community this ALS Awareness Month. This is part 1 of 3 of Amanda’s story.

Fuel Courage. Support patient-led advocacy, research, and programs: https://my.charitableimpact.com/send/to/group/als-super-fund-together-we-endals/new]

06/03/2026

“I didn’t want to hide from it. I was determined to stay strong and positive. What really keeps me going now are the simple things.”

We’re recognizing with a timeless message from Rick Zwiep — a dear friend of the Patient Voice community and a committed advocate for all Canadians impacted by ALS through ALS Action Canada.

Watch Rick's story here: https://www.youtube.com/watch?v=nIl9Ve-6wQ4 💜

As ALS Awareness Month comes to an end, we want to share a special ...

06/01/2026

People living with ALS, caregivers, advocates, partners, and supporters continue to show up every day with resilience, urgency, and strength.

Through these stories and perspectives, we hope to deepen understanding of ALS and the importance of connection, collaboration, advocacy, and action.