ALS Super Fund: Building a National Team to End ALS

A Bold Vision: A Life Not Limited by ALS

ALS (amyotrophic lateral sclerosis) is one of the most devastating diseases facing Canadians today. The progressive neurodegenerative disease attacks motor neurons, gradually taking away a person’s ability to move, speak, eat, and eventually breathe. Most people diagnosed with ALS, also known as Lou Gehrig’s disease, are told they have just three to five years to live.

But for the people behind the ALS Super Fund, the story does not end there.

The ALS Super Fund was created to bring together patients, caregivers, researchers, charities, businesses, and donors around a shared mission: to accelerate the path toward better treatments, improved access to care, and, ultimately, to help people live lives not limited by ALS. The Fund is powered by Charitable Impact and led by people who know firsthand what this disease demands of families and communities.

The urgency on this issue matters. New therapies that may slow or even reverse ALS progression are now emerging, but Canada’s healthcare system is not fully prepared to deliver rapid, equitable access to ALS patients. The ALS Super Fund exists to help close that gap by directing resources where they can create the greatest change.

For donors who want to give, deciding where can be overwhelming. There are provincial ALS organizations, research institutions, advocacy groups, patient support programs, and clinical initiatives all doing incredibly important work. The ALS Super Fund was designed for people who care deeply about advancing progress against ALS but are unsure where their support can have the greatest impact.

This Cause Fund creates one coordinated, patient and expert-led approach. Donors do not need to navigate the complexity alone.

Leadership Rooted in Experience and Determination

The ALS Super Fund was shaped by the leadership of former NHL player and ALS Action Canada Board Director Mark Kirton, who transformed his own ALS diagnosis into a national movement for action.

Diagnosed in 2018, Mark refused to retreat from public life or accept the disease quietly. Instead, he became one of Canada’s most visible ALS advocates, rallying the hockey community, researchers, policymakers, and donors around the urgent need for faster progress.

Mark believed deeply in collaboration. Early in the Fund’s development, he posed a simple question that helped define the model:

“What if we didn’t just raise money for one single charity? What if we created something bigger, a cause fund that supports all charities fighting ALS…like a Super Fund?”

That idea became the ALS Super Fund in 2023.

Mark often spoke about the importance of making giving easier and more strategic for donors. He believed people should not need to become ALS experts before they could help effectively.

“You don’t have to be an expert to give where the need is greatest because a panel of experts will do that for you and report back on the progress.”

Following Mark’s passing in 2025, the Fund continues under the leadership of ALS Action Canada’s Board of Directors and Executive Director, Leigh Naturkach, and the broader ALS Action Canada community, carrying forward the patient-led vision Mark helped build. Together with an Advisory Council made up of patients, caregivers, neurologists, researchers, and clinicians, the Fund directs support toward high-priority opportunities across Canada.

The Fund’s leadership model reflects the realities of ALS itself: collaborative, urgent, and deeply personal.

Why This Cause Fund Exists

People living with ALS continue to face a fragmented and inconsistent system across Canada.

Research funding remains insufficient. Access to clinical trials varies by geography. Drug approval pathways can move too slowly for people living with a rapidly progressing disease. Families often find themselves navigating disconnected systems while managing overwhelming physical, emotional, and financial challenges

At the same time, scientific discovery is advancing rapidly, with researchers uncovering critical new insights into ALS and identifying promising pathways to future treatments.

The challenge now is ensuring that scientific progress is matched by the investment, coordination, and urgency needed to improve outcomes for people living with ALS. 

For donors who want to help, navigating this landscape can be just as complex. Knowing which research, organizations, infrastructure, or patient supports can have the greatest impact requires deep expertise and a clear view of the ALS ecosystem. That’s where the ALS Super Fund comes in.

The ALS Super Fund exists to help connect those dots. It invests in research, infrastructure, and the people driving the development of much-needed treatments, while also improving access to the care and support Canadians living with ALS need today.

A Strategy Rooted in Collaboration and Action

The ALS Super Fund focuses on several interconnected priorities designed to strengthen Canada’s response to ALS.

1. Expanding Access to Clinical Trials

The Fund supports efforts to increase access to clinical trials and accelerate Canadian participation in emerging therapies.

One major investment supports Access ALS at McGill University under the leadership of Dr. Angela Genge. The initiative aims to create Canada’s first national ALS clinical trial network, increasing the country’s capacity to run early-phase trials and connect patients with new treatments faster.

2. Advancing Research and Data Collection

The Fund directs support toward research initiatives working to better understand ALS and identify effective treatments.

Current grants include support for the Sunnybrook Research Institute’s QuARTS ALS Trial led by Dr. Lorne Zinman, as well as partnerships with organizations such as ALS Therapy Development Institute and Vanderbilt University ALS Research Centre.

3. Improving Patient Care and Quality of Life

ALS affects every part of daily life for patients and caregivers. The Fund supports organizations working to improve care coordination, family support, respite services, and access to specialized multidisciplinary care.

This includes support for Project HOPE at the University of British Columbia, where neurologist Dr. Erik Pioro is building a comprehensive ALS clinical care team that brings together therapists, nutritionists, nurses, and social workers under one coordinated model.

4. Strengthening Advocacy and National Coordination

Supported by the Fund, ALS Action Canada continues to advocate for policy changes that improve treatment access, increase research investment, and accelerate support for people living with rare diseases.

Recent efforts include submissions to the Canada Drug Agency advocating for ALS patient perspectives to be better reflected in drug evaluation and reimbursement decisions, helping push for faster and more equitable access to promising treatments.

A National Movement Fuelled by Community

One of the defining strengths of the ALS Super Fund has been the extraordinary response from Canada’s hockey community.

Mark Kirton’s relationships throughout the NHL helped rally support from players, executives, alumni, broadcasters, and teams across the league. MLSE helped secure early funding for the Fund. Jeff Jackson, President of the Edmonton Oilers, helped mobilize support from NHL teams. Hockey figures including Darryl Sittler, Ron MacLean, Wayne Gretzky, and Börje Salming all lent their voices to the movement.

The Courage to Fight campaign brought all 32 NHL teams together to raise awareness and funds for the ALS Super Fund, which has now raised more than $ 2.2M through concerts, auctions, fundraising events, and the generous support of donors, partners, and communities across Canada.  

But the ALS Super Fund is larger than hockey.

It is a growing national network of patients, families, clinicians, donors, advocates, and organizations determined to build a more coordinated response to ALS across Canada.

A Trusted Model, Powered by Charitable Impact

The ALS Super Fund is built using Charitable Impact’s Cause Fund model.

The model pools donations together and places strategic funding decisions in the hands of trusted Cause Leaders and expert advisors. Donors can support a broad movement without needing to research every organization or initiative individually.

The Fund’s leadership and Advisory Council help identify where resources are needed most across research, clinical access, and patient care. Funds are directed to Canadian registered charities and qualified organizations working toward shared ALS priorities. This approach also helps smaller charities spend less time fundraising and more time working on their programs and activities.

For donors, this approach blends generosity with coordination and expertise.

You bring the desire to help. The Fund’s leaders bring lived experience, medical insight, national partnerships, and strategic direction.

Together, that support becomes stronger than any one organization working alone.

What Success Looks Like

The ALS Super Fund is already helping advance major research initiatives and patient-care programs across Canada and North America. Since 2023, supporters have helped raise more than $ 2.2 M for ALS research and care initiatives.

The long-term vision is a future where ALS becomes a manageable disease rather than a terminal diagnosis.

The way the Fund plans to get there is through:

• Faster access to emerging ALS treatments across Canada.
• Expanded national clinical trial infrastructure.
• Better support systems for patients and caregivers.
• Stronger coordination between ALS organizations nationwide.
• Increased research capacity and data sharing.

The work is urgent, and there is every reason to believe that the goal is achievable. 

How You Can Help

The ALS Super Fund is live and fuelled by people who believe Canada can do better for families living with ALS.

You can get involved by:

• Share the Fund with your network
• Volunteer or attend ALS Super Fund events
• Follow the Fund on social media
• Start a Giving Group to fundraise in support of the Fund
• Make a one-time or recurring donation 

However you choose to get involved, your support helps move critical work forward. To learn more, connect with the team, access resources, and stay informed about upcoming events and opportunities, visit the ALS Super Fund page.

The ALS Super Fund was created around a simple belief: people facing ALS deserve faster progress towards a cure, and stronger support now.

Keep an eye out for ALS Super Fund’s Courage to Fight. This North American-wide campaign is bringing the hockey community together to rally around people living with ALS and drive progress against the disease. Courage to Fight nights will be taking place at NHL arenas across North America throughout the season.

Learn more about Courage to Fight.