Editor’s note: we are actively seeking to feature ALK-positive patient-led groups and organizations from around the world. If you are the leader or founder of such an entity and would like it featured in our newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org.
Can you share with our readers the founding story of ALK Positive Canada? What inspired the establishment of the organization?
ALK Positive Canada Inc. (APC), a Canadian federally incorporated non-profit group, began with a small group of patients who felt compelled to do more. The spark came when Duncan Preece, already part of ALK Positive Inc. in the US for the past several years, reached out to fellow Canadians living with ALK-positive cancer and invited us to connect on a Zoom call. To all come together at once was wonderful and cathartic – we needed this connection. What started as introductions and a simple conversation, quickly turned into a shared realization: if we wanted meaningful change for Canadians with ALK-positive cancer, we needed to formally organize.
At the time, patients and caregivers across the country were left piecing together scattered information and facing uneven access to treatments, with only a subset of patients connecting in an online private community forum. In a field where research and treatment options evolve so quickly, this wasn’t nearly enough. We knew there had to be a better way to bring us together, share the latest knowledge, and push for equitable access to care.
That is why ALK Positive Canada was created. We knew we could fill in gaps that could directly impact quality of life and survivorship. From the very beginning, we had the intention to serve as a trusted, national resource for patients and caregivers while building a united advocacy strategy that can influence real change in drug and clinical trial access. The organization is shaped by both loss and determination.
What are the core pillars of ALK Positive Canada and how do these shape the organization?
Before answering that, the context is important. For those who don’t know Canada, it’s the second biggest country in the world (after Russia), with a population about the same as California (44 million). It is divided into 10 provinces and three territories, each with a slightly different healthcare system, plus a federal system, making everything we do just that more complex.
One of the first things we established was that no patient or caregiver, no matter where they live, should be left without the care, information, and the community they deserve. It is important that we serve every Canadian. This includes ensuring our website, resources and more are fully bilingual in English and French, the two national languages.
From here, we came up with our 4 main pillars, CARE: Community, Advocacy, Research, and Education.
– Community means that no patient or caregiver has to walk this path alone. We create spaces where people can connect, share experiences, and support one another.
– Advocacy gives our community a voice at the tables where decisions are made. Whether meeting with policymakers, engaging with healthcare leaders, or influencing access to new treatments and trials, we ensure that the needs of patients are heard and represented.
– Research is about supporting research efforts to improve treatment outcomes and move toward a cure. We look to bridge the gap between leading research networks and patients.
– Education ties everything together. From patient-friendly resources to direct access to Canada’s top oncologists, we provide the knowledge needed to make informed decisions with their healthcare teams.
These pillars have helped us move ahead, ensuring every decision and project we take on aligns with our organization.
Looking ahead, what is the vision for ALK Positive Canada in the coming years? Are there any strategic goals or projects that the organization is particularly excited about?
Ultimately of course, we envision a future where ALK‑positive cancer no longer exists. It’s a big vision and we are ready to reach it. This will involve national and international collaboration on a scale never seen before. Looking to the next year or two, there are a few exciting initiatives we look forward to:
1. We are excited to expand partnerships with oncologists, pharmaceutical companies, research networks, and lung health organizations, both nationwide and, increasingly, internationally. By working together, we know we can unite voices and advocate more effectively for fair access to both treatments and clinical trials.
2. We also aim to bring a wealth of Canadian-focused information to patients and caregivers through a variety of channels—from in-person and virtual meetups to videos, website content, and more. Our goal is to ensure that the latest knowledge and resources are accessible to everyone, no matter where they live.
3. We are committed to being a close partner for thoracic oncologists and research networks across the country, ultimately helping to make sure that every patient has access to the best possible care – from the latest treatments to clinical trials. It’s been empowering to meet clinicians who are fierce advocates of the ALK-positive cancer community, and we look forward to pushing ahead together.
Lastly, what message would you like to convey to our readers regarding the significance of ALK Positive Canada’s work and the importance of supporting its mission?
I do believe that the work we are doing with ALK Positive Canada will ripple to other countries, just as other countries’ work ripples to ours. It’s the momentum from around the world that breaks down barriers and leads to new innovative approaches. Whether it’s improving health care systems, generating new research or improving patient knowledge, we are all supporting better outcomes for ALK-positive patients, caregivers and communities. Let’s all keep going!
Interview by: Duncan Preece
