Tammy Moore serves as the CEO of the ALS Society of Canada (ALS Canada), an organization dedicated to transforming the experience of living with amyotrophic lateral sclerosis (ALS). By investing in cutting-edge research and advocating for equitable access to treatments, ALS Canada addresses the critical need for life-changing solutions to this devastating disease. Recognized as a trusted information source, ALS Canada supports individuals and families by providing resources, educational workshops, and direct community services, especially in Ontario, to improve quality of life. Since becoming CEO in 2014, coinciding with the global impact of the ALS Ice Bucket Challenge, she has witnessed increased awareness and research momentum. Yet, despite advances in clinical trials and therapies, the journey continues to ensure consistent access to treatments and care across Canada. ALS Canada remains steadfast in its mission to support those affected and to drive progress toward a future free of ALS.
Describe your charity/non-profit/volunteer work in a few sentences.
ALS 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 the most promising research, engaging industry, supporting clinical care, and advocating for equitable, affordable, and timely access to proven therapies. We are a trusted source of information, providing resources and opportunities for knowledge exchange that empower people to make informed decisions. In Ontario, we provide direct community services to help people navigate ALS and access the support and equipment they need.
What problem does it aim to solve?
Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that progressively paralyzes people. This occurs because the brain can no longer 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. It is a devastating and terminal disease with no cure and few treatment options. Our work aims to advance ALS research, improve quality of life, and ensure that people living with the disease are supported, informed, and not alone in facing what lies ahead.
In Ontario, our Community Leads provide direct community support throughout the province to help people navigate their experience with ALS and access the care, services, and equipment they need. Nationally, we offer virtual support groups and educational workshops for people living with ALS, caregivers, and families. We work to help people with ALS live better for as long as possible while moving the needle toward a world free of ALS.
When did you start/join it? What made you want to get involved?
I was aware of ALS, but when my cousin Doug was diagnosed in 2008, it became deeply personal. I saw firsthand how the disease affected not just the person diagnosed but my entire family. That experience motivated me to get involved, first as a board member with ALS Canada. Over time, I developed a strong connection to the community and the work, ultimately leading me to step away from private equity and management consulting to take on the CEO role in 2014.
What was the situation like when you started? How has it changed since?
I joined ALS Canada in 2014, the same year the ALS Ice Bucket Challenge captured the world’s attention. It was a pivotal moment for ALS. Awareness skyrocketed, and a wave of generosity helped shine a light on a disease that had long been underfunded and overlooked. At that time, there was growing momentum in research funding, but treatments were still incredibly limited.
Since then, we have seen meaningful progress with more clinical trials, new therapies becoming available, and a stronger, more unified voice from the ALS community advocating for change.
But there is still much work to be done. Continued investment in ALS research to better understand and treat the disease, is imperative. Access to treatments and care remains inconsistent across Canada, and people living with ALS do not have time to wait.
What more needs to be done?
We need continued and increased investment in ALS research, faster access to new treatments, and consistent, equitable support for every Canadian affected by this disease, regardless of where they live. We also need to ensure that governments understand the urgency and act accordingly. Time is not a luxury that people with ALS have, and we owe it to them to keep pushing.
How can our readers help?
You can make a difference by learning about ALS, sharing what you learn, and supporting our mission. Every action counts – whether it’s donating, participating in one of our fundraising events, or advocating for change. Together, we can push for progress and support the ALS community.
Where can we follow you?
Website | Instagram | Facebook | LinkedIn
PAY IT FORWARD: What is an awesome local charity that you love?
I really appreciate the work of the health charities in Canada, they each provide such incredible support to Canadians affected by disease through supports and information, while investing in research to change the future. The Health Charities Coalition of Canada brings health charities together for information sharing, advocacy initiatives and collaborative efforts that no one organization could do on its own.
