TORONTO— The ALS Society of Canada (ALS Canada) and the Kevin Daly Bursary Fund are proud to announce the 2024 ALS Canada Kevin Daly Bursary recipients. Four post-secondary students with a personal connection to amyotrophic lateral sclerosis (ALS) have been awarded $2,500 bursaries, totaling $10,000, to support their studies for the 2024-2025 academic year.
Now in its second year, the ability to award more bursaries has increased thanks to the kindness of the community, including contributions from TELUS employees. Established in 2023 to honour Kevin, a devoted father and husband diagnosed with ALS in 2020, the Bursary Program has made a significant impact by supporting seven students in total who have been affected by ALS through a loved one’s diagnosis.
“ALS Canada is honoured to work alongside Kevin, as well as his family, friends, and colleagues, to create this legacy by empowering students who are passionate about making a difference in contributing to a world free of ALS,” says Tammy Moore, CEO at ALS Canada. “An ALS diagnosis can be devastating for a family, upending dreams for the future. This initiative helps alleviate some of the financial burdens of post-secondary education and has the potential to support the next generation of leaders in ALS care and research.”
This year’s recipients have demonstrated exceptional dedication to advancing the care and treatment of people living with ALS through their involvement in community fundraising events, awareness building, and volunteering. They intend to carry forward this commitment as they advance in their lives and education.
“For anyone with ALS, the steady progression of the disease requires a constantly increasing amount of support. Much of that support is provided by the family, and it’s often the young adults in the house who go unnoticed,” says Kevin Daly. “For people taking on a caregiver role but wanting to start the next phase of their own life, the ALS Canada Kevin Daly Bursary is to help them relieve some of the financial burdens of post-secondary education. It’s exciting to see how their choices in university are focused on improving the lives of those with ALS.”
More than 4,000 Canadians are living with ALS, a disease that progressively paralyzes individuals by preventing the brain from communicating with the muscles. As a result, people with ALS often face a swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us.
2024 recipients
Emma Heaney, 23, is beginning her first year of study for a Master of Science in Occupational Therapy at the University of Western Ontario in London, Ontario, and completed a Bachelor of Science in Health Studies at the University of Waterloo. Motivated by her father Brian, who has lived with ALS for more than 14 years, Emma intends to pursue a career in occupational therapy to provide adaptive support to people living with disabilities, helping them feel included and fulfilled in life.
“I am honoured to be a recipient of the ALS Canada Kevin Daly Bursary. I will put this bursary towards completing my Master of Science in Occupational Therapy, which I am starting this fall,” says Emma Heaney. “Throughout my career as an occupational therapist, I want to help people with ALS and their families in the same way others in this field have done for my dad and my family. I know that my personal experiences will help me to make a positive impact on the ALS community. I am proud to represent my dad, Brian Heaney, through receiving this award, and I am committed to a world free of ALS.”
While assisting his father, Dennis, in preparing his will before he passed away in 2023, 24-year-old Tristan Hopkins was inspired to pursue a career in law to help other families in need of end-of-life legal aid, by focusing on wills and estates. Tristan is entering his second year in the Juris Doctor law program at Queen’s University in Kingston, Ontario. In addition, Tristan has mentored students experiencing health issues within their families.
“I am grateful for the support of Kevin Daly, his family, and the ALS Society of Canada for supporting my education through the ALS Canada Kevin Daly Bursary,” says Tristan Hopkins. “I now have the privilege of continuing my education during the most difficult period of my family’s life. I am motivated to use this scholarship to ensure my family can live a happy and healthy life – the one my father envisioned for us. I hope that other students can benefit from this scholarship in the future and that they can feel hope while navigating uncertain times.”
Alexandra McLaren, 24, is starting her third year of the MD program at the Temerty Faculty of Medicine at the University of Toronto. She has already completed a Master of Neuroscience and a Bachelor of Science Honours at Queen’s University. Influenced by her father, Alexander, who passed away from ALS, Alexandra intends to dedicate her life to supporting people facing neurologic diagnoses as a neurologist.
“I am deeply appreciative of the generosity of the Daly family and ALS Canada to financially support me on my journey to becoming a neurologist, a specialty that is near and dear to my heart,” says Alexandra McLaren. “I was honoured to receive this bursary in recognition of my resilience, and I feel empowered to follow my dreams with confidence. The kindness of the Daly family is inspirational, and I hope to one day help students achieve their goals and help alleviate financial burden just as they have helped me.”
At 17, Zachary Wood is beginning his post-secondary career at McMaster University in Hamilton, Ontario, where he is studying engineering. His father, Peter, has been living with ALS for 10 years, and witnessing the impact of technology on his father’s daily life managing disease symptoms has fueled Zachary’s passion for engineering. He aims to build groundbreaking projects to make a difference in people’s lives.
“I was eight when my father was diagnosed with ALS. It robbed me of years of him being active in my life,” says Zachary Wood. “I will study engineering with the hope of having the tools to develop devices to help people with disabilities. The ALS Canada Kevin Daly Bursary will significantly help me realize that goal.”
For more information about the ALS Canada Kevin Daly Bursary, visit als.ca/bursaries.
About ALS and the ALS Society of Canada
Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.
The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity, and advocating for equitable, affordable, and timely access to proven therapies.
Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.
Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a world free of ALS.
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Join the conversation and connect with the ALS community online. Find ALS Canada on X, Instagram, or like our page on Facebook. Visit als.ca to find out more.
For more information
ALS Society of Canada
media@als.ca
437-703-5402
Toronto, August 6, 2024 — Today, the ALS Society of Canada (ALS Canada) recognizes the 10th anniversary of the ALS Ice Bucket Challenge making a splash across Canada. The viral social media trend united athletes, celebrities, and politicians, with more than 260,000 Canadians taking part in the challenge, enduring a few seconds of discomfort while raising unprecedented awareness and $17.2 million in Canada for amyotrophic lateral sclerosis (ALS) research, advocacy, information resources, and services.
ALS is a neuromuscular disease that progressively paralyzes people because the brain can no longer communicate with the muscles of the body that we can typically move at will. As a result, people with ALS often face a swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us.
Challenged by friends and inspired by people affected by ALS sharing their stories, generous donations were divided amongst the provincial ALS Societies across Canada, with $11.5 million invested in research, and the remainder allocated to provide services to people living with ALS across the country.
“The ALS Ice Bucket Challenge was a watershed moment for the ALS community, educating people who may have been unfamiliar with the disease and shining a spotlight on how devastating it can be to receive a diagnosis. We are grateful for the generosity of Canadians, which continues to have a lasting impact,” says Tammy Moore, CEO of ALS Canada. “Today, more than 4,000 Canadians are living with ALS, and while our collective efforts have made great strides, there is still much work to be done. We remain committed to advancing research and improving the quality of life for people affected by ALS.”
The significant investment in research back in 2014 was further amplified by a partnership with Brain Canada, which matched the funding of the ALS Canada Research Program. To date, this collaboration has supported 50 research grants in laboratories and institutions across Canada. These projects have advanced the understanding of ALS, including its causes, symptoms, and treatments, and have established a strong foundation for future breakthroughs in ALS research and care.
“ALS had never received recognition or understanding like other, more common diseases. The Ice Bucket Challenge changed that, providing critical funding needed to make progress in our understanding and treatment of ALS,” says Dr. David Taylor, Vice-President of Research and Strategic Partnerships at ALS Canada. “Advancements over the last decade are in part thanks to the hundreds of thousands of Canadians who took on the challenge and donated. We’re honoured to work alongside the ALS community and dedicated researchers as we continue to make progress toward a world free of ALS.”
Funds raised also supported critical national projects, such as developing the first-ever Canadian Best Practice Recommendations for the Management of Amyotrophic Lateral Sclerosis in 2020 in collaboration with clinicians. These recommendations ensure that individuals with ALS receive specialized multidisciplinary care and address crucial issues such as the timeliness of care, disease-modifying therapies, medical assistance in dying (MAiD), and caregiver support.
Among the research initiatives made possible by these funds is CAPTURE (Comprehensive Analysis Platform To Understand, Remedy, and Eliminate) ALS, which continues to recruit people living with ALS and healthy participants at multiple institutions across Canada. This initiative aims to expand and provide open science data to collaborate with global initiatives and work to fast-track our understanding of disease heterogeneity, discover new biomarkers and accelerate toward personalized medicine.
ALS Canada is calling on Canadians to fill their buckets once again and help continue the momentum. To support Canadians living with ALS and invest in Canadian ALS research, donate at als.ca. Take the ALS Ice Bucket Challenge today, 10 years later, and tag @ALSCanada on social media. More information on the projects funded through the Ice Bucket Challenge can also be found at icebucketchallenge.ca.
About ALS Canada and the ALS Canada Research Program
The ALS Society of Canada (ALS Canada) is working to change what it means to live with amyotrophic lateral sclerosis, an unrelenting and currently terminal disease.
Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable, and timely access to proven therapies.
Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change.
Through the ALS Canada Research Program, we fund peer-reviewed research grants, foster collaboration and build capacity within Canada’s ALS research and clinical community, and invest in new areas of research positioned to have high impact. As the only national dedicated source of funding for ALS research across Canada, the ALS Canada Research Program aims to accelerate research impact by providing funding for the most promising ALS projects focused on translating scientific discoveries into treatments for ALS. We are grateful for the support of our donors and the contributions from participating provincial ALS Societies through the Walk to End ALS.
Join the conversation and connect with the ALS community online. Find ALS Canada on Twitter, Instagram, or like our page on Facebook. Visit als.ca to find out more.
For more information
ALS Society of Canada
media@als.ca
437-703-5402
Earlier this month, ALS Canada sent a letter to Federal Minister of Transport, the Honourable Pablo Rodriguez, highlighting the urgent need for accessible air travel for Canadians who rely on mobility devices like wheelchairs, including people living with ALS, and advocating for equitable access to air travel for all.
For people living with ALS, air travel offers opportunities to connect with loved ones, access care in ALS-specialized clinics, and participate in clinical trials. Yet, they often encounter significant challenges during air travel, such as damage to or loss of wheelchairs, and discomfort or injury from transferring out of specialized chairs, compromising their safety and well-being. Living with ALS already presents considerable challenges, and the lack of accessible air travel only adds to these difficulties, underscoring the urgent need for action in this area.
We remain committed to working with the federal government to ensure that people using mobility devices, including people living with ALS, can travel by air safely and with dignity.
To read our letter and learn more, click here.
Today, in recognition of Global ALS Awareness Day, the ALS Society of Canada (ALS Canada) and the ALS Society of Quebec (ALS Quebec) are proud to announce their partnership to co-host a series of international meetings dedicated to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and motor neuron disease (MND). The series will begin with the International Alliance of ALS/MND Associations Annual Meeting, followed by the Allied Professionals Forum, culminating with the 35th International Symposium on ALS/MND this December in Montreal, Quebec.
These annual meetings unite stakeholders from across the global ALS ecosystem to address the issues facing people affected by ALS today and to create a future for a world free of ALS/MND. They provide a platform to share initiatives happening around the world and will offer an opportunity to highlight the contributions of researchers, health professionals, and ALS organizations in Canada.
The International Alliance of ALS/MND Associations Annual Meeting will take place on December 2-3. This meeting aims to share insights and strengthen collaborative efforts to address the needs of people affected by ALS.
The Allied Professionals Forum will be held from December 4-5 and will gather a diverse range of health care professionals for knowledge exchange and to learn about advancements in ALS/MND care.
The Allied Professional Forum and Alliance Meeting will convene more than 500 delegates from 40+ countries both virtually and in person.
Finally, from December 6-8, the International Symposium on ALS/MND, the largest medical and scientific conference dedicated to ALS/MND research, will bring together more than 1,200 delegates from around the world, including researchers, clinicians, allied health professionals, industry, people living with ALS and their loved ones, to discuss and share the latest advances in research, care, and treatment.
The symposium will feature a diverse program that includes basic and clinical science, therapy development, and clinical management. Delegates will have the chance to showcase their research through poster exhibitions and presentations.
Meetings are in person and virtual. For more information and to register, visit https://symposium.mndassociation.org/.
ALS Canada
“ALS Canada is honoured to co-host these important international meetings in Montreal this December alongside our partners at ALS Quebec. This provides an invaluable opportunity for the world’s leading researchers, health care professionals, and people affected by ALS to come together to share ideas, spark future collaboration, and potentially the next breakthrough,” says Tammy Moore, CEO of the ALS Society of Canada. “By fostering these global connections and sharing the latest advancements in research and care, we move closer to our shared goal of a world free of ALS.”
ALS Quebec
“ALS Quebec is thrilled to welcome the global ALS/MND community to Montreal, a city renowned for its vibrant culture and collaborative spirit,” says Claudine Cook, Executive Director of ALS Quebec. “Alongside our co-host ALS Canada, we’re looking forward to the energy and commitment of delegates around the world whose personal and professional knowledge and experiences will inspire continued action and change in creating a brighter future for all affected by ALS/MND.”
International Alliance of ALS/MND Associations
“For the Alliance, we see the ALS/MND research and care as a global endeavour. This disease transcends borders, and we can learn a lot from how professionals in other countries are handling issues and how care is provided,” says Cathy Cummings, CEO of the International Alliance of ALS/MND Associations. “To think more broadly, we need international collaboration among all the people affected: our members, researchers, service providers and people living with ALS/MND. This is what our conferences provide. Participants leave with new connections and motivation to do more to win the fight against ALS/MND.”
Now in its second year, the ALS Society of Canada (ALS Canada), along with Kevin Daly’s friends and colleagues, welcome applications to the post-secondary ALS Canada Kevin Daly Bursary. The $2,500 bursary will be awarded to a post-secondary student whose life has been touched by ALS, a testament to the collective support and care for members of the ALS community.
In 2023, the Kevin Daly Bursary Fund was established to honour Kevin, a devoted father and husband, who received an ALS diagnosis in 2020. Inspired by Kevin’s courage and dedication, the bursary is designed to alleviate some of the burden experienced by students pursuing post-secondary education.
“ALS Canada is grateful to once again partner with Kevin, his family, and colleagues to offer this opportunity to a community member and support them in pursuing their dreams,” says Christopher Pon, Vice-President of Fund Development at ALS Canada. “An ALS diagnosis is devastating for a person who receives it and their family, and it can upend any immediate and long-term plans. We hope the ALS Canada Kevin Daly Bursary can help ease some of the financial strain.”
The Bursary is open to Canadian students who have been accepted into a post-secondary school within Canada for the 2024-2025 term. Extra consideration will be given to those who are studying within an area that could support ALS research, care, or advocacy (e.g., biomedical sciences, nursing, neuroscience, political studies, law, etc.). Eligible students must also have a close connection to ALS: people who face the challenges of living with ALS through a parent, a legal guardian or close relative, or those who have lost loved ones to ALS.
“As more people receive an ALS diagnosis, the lives of loved ones around them are forever impacted, often silently paying a significant price,” says Kevin Daly. “We are raising funds to support those students whose pursuit of post-secondary education is hindered by the financial burden and responsibilities of being a caregiver. Our aim is to ease the impact of this terrible disease on young adults who are just beginning their own lives.”
Applications for the 2024-2025 academic year open on Tuesday, May 14, 2024, and close at midnight Eastern time on June 18, 2024. The application form can be found on the ALS Canada website. All applications will be anonymized and reviewed by a panel appointed by ALS Canada, including members of the ALS community, and a decision will be made before the 2024 academic year begins in September.
The Kevin Daly Bursary Fund was created as part of a lasting legacy, celebrating Kevin’s life and character. Funding is raised through the Bursary Fund campaign, with donations managed by ALS Canada and the TELUS Team Care program. The campaign is held annually and grants at least one bursary worth $2,500 each year. Thanks to the generosity of donors, in 2023, three bursaries were granted to students located in Alberta, British Columbia, and Quebec. Donors will receive a receipt from ALS Canada for their contributions. For more details about the Fund, please visit kevindalybursary.com.
We are heartbroken to share with you that Eddy Lefrançois, ALS Canada Ambassador, passed away earlier today – a tremendous loss for the ALS community of a champion, advocate and friend.
Diagnosed with ALS in 1992 with a prognosis of three to five years to live, Eddy became a force within the ALS community, showing the world that he would not be defined by his disease. A rare example of someone who lived well beyond the average life expectancy of someone diagnosed with ALS, Eddy approached each day as an opportunity. In 2013, he defiantly had the date 04.97 tattooed on his arm as a daily reminder of his achievement living beyond his “expiry date.” With no fear in his heart, he travelled around North America and parts of Europe working on his bucket list, rolling across all terrains into adventures that included a Stanley Cup final game, whitetail deer hunt, and indoor skydiving.
Eddy worked tirelessly to raise awareness of the disease and mobilize others to support the cause. In his words, “I may not control the fact that I have ALS, but I control my actions to make people aware that ALS is a terrible disease to live with… anybody can develop it at any time; we have to work together for ‘A Future Without ALS.’”
Even after the disease took away his ability to speak, Eddy used social media and his personal website to connect with people near and far. He was widely seen as a supportive voice and champion to people living with ALS, often being contacted by those across Canada and around the world to share his perspective and experience, along with his motto “let’s roll…”. Quick with a joke and his familiar grin, he was a reminder to all of us to live life with gusto and make every day count.
Farewell, notre ami, we are fortunate to have known you and are grateful for all you have done in support of our shared cause. You will be remembered always. Let’s roll…
