FOR IMMEDIATE RELEASE
December 15, 2023
United to #EndALS: Canadian National Hockey League Teams Unite to Support the ALS Super Fund
TORONTO – The Canadian National Hockey League (NHL) teams are uniting in a landmark initiative to support the ALS Super Fund, a broad-based campaign to find better treatments and support for Canadians living with Amyotrophic Lateral Sclerosis (ALS). This joint effort, inspired by the voices of ALS patients and led by former NHL player Mark Kirton, is part of a growing, patient-led movement dedicated to finally curing this devastating disease.
Mark Kirton, an ALS patient since 2018 and esteemed ALS Action Canada board member, has spearheaded awareness and advocacy efforts since his diagnosis and, recently, within the NHL community. His dedication has activated prominent athletes and media representatives to endorse helping eradicate ALS, including Wayne Gretzky, Darryl Sittler, Wendel Clark, Christine Simpson, and Don Cherry, among several others. Mark has also produced 33 ALS support videos highlighted on social media and the ALS Super Fund website. His determination led to the remarkable alliance of all seven Canadian NHL teams, which have united to amplify ALS advocacy and raise significant funds for research.
“The NHL community has felt the impact of ALS on many of its members. The disease moves rapidly, but access to potential therapies in Canada does not”, said Mr. Kirton. “There has never been a more promising time to change ALS from a terminal disease to a treatable condition. We are grateful to the NHL for recognizing the significant need to support Canadians with ALS.”
The ALS Super Fund, an initiative of ALS Action Canada, is a unique model, led by patients, guided by experts, and implemented by charitable organizations working toward common cause across the country. The Super Fund is focused on results: advancing research and ensuring equitable access to treatments and trials for all Canadians.
Hosted by Charitable Impact, the ALS Super Fund offers a streamlined way for donors to contribute directly to the ALS cause, in whatever province or region of their choice where ALS is treated and/or researched. Indeed, the Super Fund initiative has already resulted in over 1200 generous donations from individual donors and several communities, including members of the NHL.
ALS, or Lou Gehrig’s disease, is a progressive neurodegeneration that leads to muscle weakness, loss of mobility and the ability to eat and speak, ending with paralysis and respiratory failure. The progressive degeneration of motor neurons means an ALS patient has an average life expectancy of 3 to 5 years post-diagnosis. The impact of ALS takes an enormous toll on patients but also profoundly impacts their families and caregivers.
“One of the most frustrating challenges for ALS patients in Canada, once a new therapy has been finally approved by Health Canada, is not only the incredibly long wait time for approval but also the stringent administrative criteria determining which ALS patients are eligible for the treatment”, said Mr. Kirton. “In certain instances, fewer than 10% of the ALS patient population will meet the criteria and qualify for access to the new drug therapy. That is simply wrong and undeniably unjust.”
Mark Kirton expressed his deep appreciation to the seven Canadian NHL teams for their support, noting the urgency in light of ALS affecting the hockey world, including newly diagnosed Bob Jones of the Ottawa Senators and the recent passing of Börje Salming and Chris Snow. He stressed the need for action against this underfunded, devastating illness that deeply impacts patients and their families. Kirton emphasized that this partnership will significantly aid those suffering from ALS.
NHL Executives Urge Teamwork in Finding a Cure
Canada's seven NHL teams - the Vancouver Canucks, Edmonton Oilers, Calgary Flames, Toronto Maple Leafs, Montreal Canadiens, Ottawa Senators, and Winnipeg Jets – have all teamed up to collectively fight ALS. Their efforts include 50/50 draws, auctions, skills competitions, and merchandise sales, all aimed at boosting awareness and support for the ALS Super Fund.
“This cause is near and dear to the hearts of hundreds of thousands of people and families worldwide,” said Maple Leafs General Manager Brad Treliving. “Both Börje Salming and Chris Snow have touched the hockey community in unmeasurable ways, and the Maple Leafs are proud to play their part in raising awareness and helping fund research to fight this horrific disease.”
“The Winnipeg Jets are proud to join all Canadian NHL teams in bringing awareness of ALS and the great work of the ALS Super Fund to our fans and in inviting them to get involved,” said Mark Chipman, Executive Chairman of the Winnipeg Jets. “The ALS Super Fund directs funds where they will have the most impact on Canadian families suffering from this devasting disease, and we know fans will band with us in support.”
Jeff Jackson, CEO of the Edmonton Oilers, acknowledged: “Our organization is so happy to support the ALS Super Fund initiative and the six other Canadian NHL clubs. While we compete against each other on the ice, we are a united front in the fight against ALS.”
“Hockey has the power to bring passionate fans together to support and rally around some incredible causes. This campaign for ALS is vitally important as we continue to raise awareness and search for answers to try and stop this terrible life-limiting disease,” affirmed Jim Rutherford, President of the Vancouver Canucks.
“In Ottawa, we continue to support assistant coach Bob Jones’ battle with ALS,” said Ottawa Senators President Cyril Leeder. “It is meaningful that all seven Canadian NHL teams are unified in support of the ALS Super Fund; we hope this initiative will provide a much-needed profile and financial support that can aid in the research to help end ALS one day.”
“ALS has impacted our Flames family directly; we are encouraged to join our Canadian NHL community by supporting research together and continuing the battle to find a cure. Nobody fights this terrible disease alone. For those suffering from ALS and their loved ones, we hope our combined strength will make a bigger difference in the pursuit of a cure in the face of this underfunded illness,” said Don Maloney, President of Hockey Operations at Calgary Flames.
“The great hockey family has witnessed the tremendous courage and determination of many of its own in their fight against this terrible disease. The Montreal Canadiens are proud to play a role alongside all six Canadian NHL teams in raising awareness and supporting the ALS Super Fund initiative,” said Kent Hughes, General Manager of the Montreal Canadiens.
To Donate to the ALS Super Fund
For further information about the ALS Super Fund and its unique role in the #EndALS campaign, visit https://www.alssuperfund.ca/. ALS Super Fund Contact: Jida@alsactioncanada.org
Media Contact: Kathryn Hendrick, (416) 277-6281, Kathy@khcomms.ca
BACKGROUNDER ALS ACTION CANADA
For 100+ years, thousands of people diagnosed with Amyotrophic Lateral Sclerosis (ALS) were sent home by their doctors to die a horrific death because there were no effective treatments available. This lack of a curative ALS therapy, with challenges to accessing current drug treatments and adequate homecare support, constitutes a health crisis in Canada and worldwide.
In recent years, however, the ALS story has begun to change. There is unprecedented hope, given that there are around 90 development programs for drugs approved or in clinical development for the treatment of ALS. Most importantly, there is a growing movement of ALS patient-led advocacy organizations, like ALS/SLA Action Canada, demanding more tangible and urgent action, not just awareness.
Canadian patients are faced with a crisis of hope. Despite the prospect of scientific breakthroughs, the current Canadian drug approval process can be longer than the expected lifespan of an ALS patient. To influence change, members of ALS/SLA Action Canada, the only ALS patient-led movement in Canada, are focused on the following:
1. Ensure immediate access to promising therapies once approved in Canada and other countries.
2. Bring well-designed clinical trials to Canada for ALS that reflect the timely progression and fatality of the disease.
3. Increase the funding for ALS research and ALS data in Canada.
4. Provide support for patients and families living with ALS.
Canadian patients want to collaborate as best they can to make ALS treatable and curable, but time is of the essence. ALS should not be an incurable disease. It is a neglected and underfunded disease, especially in Canada.
