Together,
we will end ALS.
Who we are
a movementled by patients – driven by urgency
ALS Action Canada is Canada’s only national, ALS patient and caregiver-driven organization focused on raising patient voices and building a movement toward ending ALS. Through our ALS Super Fund, ALS Action Canada fuels its work and directs funds to other organizations leading in ALS programs, research, and advocacy to advance trials, treatments and research. Together, we will #endALS.
VISION,MISSION & GUIDING PRINCIPLES
Vision
A world without ALS.
Mission
To support families living with ALS by mobilizing a patient-led, public movement to advance affordable and improved care, swift and equitable access to promising therapies and clinical trials throughout Canada, and to ensure the federal and provincial governments increase investment in ALS research.
Guiding Principles
- Deep compassion
- Relentless positivity
- Humility
- Collaboration
- Effectiveness
- Accountability
- Integrity
Our engine for change
ALS Super Fund
– united in ending als
Led by ALS Action Canada and guided by an expert Advisory Council, the ALS Super Fund mobilizes and convenes people, communities, and organizations to raise awareness about and fund the most innovative work in advancing care, treatment, trials and research toward ending ALS in North America.
Learn more about the ALS Super Fund
OUR JOURNEY
From a spark of courage
to a national movement
Courage ignited change — now a movement drives it forward.
HISTORY & founders
2020 In 2020, people living with ALS including Greg Gowe (BC), Deane Gorsline (ON), Rick Wilson (BC), Bill Duff (NS), Kerry Winkler (BC), Jody Pressman (ON), Rony Podolski (ON) and Shelly Hines (NS) took the first steps toward a truly cross-Canada patient-led movement.
2021 In June 2021 the ALS Action Canada Society was incorporated under the BC Society’s Act, with Deanne, Rick and Greg as the first Directors. ALS Action Canada became a registered charity on May 10, 2023.
2023 By 2023, ALS Action Canada fundraising was increasingly driven by former NHLer and Board Director Mark Kirton. Mark’s dream was to get everyone playing on the same team to end ALS. He wanted to raise funds for a growing movement, supporting ALL organizations pursuing the same goals. This evolution from charity to movement led to the creation of the ALS Super Fund – North America’s only fund that supports all organizations and researchers working to end ALS. The unique nature of the Super Fund and Mark Kirton’s connections and charisma ultimately produced a transformative partnership with the NHL and 32 clubs through the Courage to Fight campaign.
It is through this continued courage that ALS Action Canada now has a powerful two-pronged approach to increasing momentum on ALS: ALS Action Canada as the platform for patient voice, leading the ALS Super Fund alongside it to mobilize supporters to fuel the solutions.
Our
leadership
executive director
Leigh Naturkach
Board of Directors
- Darryl Borsato
- Roger Charles, Treasurer
- Kevin Dawson
- Louis Del Re
- Jeff Jackson
- Adrienne Molinski
- Kevin Moorhead, Vice-Chair
- Erin Morantz
- Cali Orsulak
- Paul Thandi
- Don Wright, Chair
- Rick Zwiep
ALS Super Fund Advisory Council
- Dr. Ammar Al-Chalabi
- Dr. Merit Cudkowicz
- Dr. Andrew Darke
- Dr. Angela Genge
- Dr. Wendy Johnston
- Dr. Lawrence Korngut
- Dr. Colleen O’Connell
- Cali Orsulak
- Don Wright
- Dr. Lorne Zinman
- Rick Zwiep
Advocacy Committee
- Darryl Borsato
- Dr. Andrew Darke
- Louis Del Re
- Saba Manzoor
- Chris May
- Leigh Naturkach
- Cali Orsulak
- Dave Taylor
- Don Wright
- Rick Zwiep
FUNDRAISING Committee
- Gino Del Re
- Louis Del Re
- Wade Hall
- Shannon MacPherson
- Kevin Moorhead
- Erin Morantz
- Leigh Naturkach
- Amanda Tam
- Dave Taylor
Governance & Finance Committee
- Roger Charles
- Kevin Dawson
- Erin Morantz
- Leigh Naturkach
Membership Committee
- Colleen Hudson
- Kim McGlade
- Adrienne Molinski
- Leigh Naturkach
- Paul Thandi
- Rick Zwiep
Partners & COLLABORATORS
our partners in the als community
ALS Alberta
ALS BC
ALS Canada
ALS Canadian Alliance
ALS Quebec
ALS TDI
Augie’s Quest
Canadian Collaboration to Cure ALS
Canadian Organization for Rare Disorders
Peter Frates ALS Foundation
Tackle ALS
Team Goose
Donors & Supporters
coming soon
JOIN THE MOVEMENT
DONATE
Every dollar makes a difference
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GET INVOLVED
Learn how you can take action
Read how
AMPLIFY
Help spread the word
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EVENTS & CAMPAIGNS
Join, support or lead an event
Learn more
The fight continues &
every action fuels progress
Stand with us to end ALS.