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.
Oncogene Cancer Research’s focus is quite unique from the ALK groups we normally feature in our newsletter. Can you share the founding story of Oncogene Cancer Research? What inspired the establishment of the organization?
Not long after I was diagnosed with stage 4 ALK+ lung cancer in August 2021, I found myself drawn to medical research. It quickly dawned on me that research is the reason people like me are still here today. I started by using my professional skills in communications and social media and began volunteering with ALK Positive, where I saw firsthand the power of patient-driven research and education.
Through other advocacy work where I live in the UK, I became friends with Jan Clark, whose daughter Amy was diagnosed with ALK-positive lung cancer at just 20 years of age. Together, we were struck by a sobering realization: we all face resistance mutations, and nearly half of us eventually lose ALK as the main driver of our disease. We also noticed that many breakthroughs in ALK lung cancer have stemmed from discoveries in other oncogene-driven cancers, like EGFR.
Those insights raised a vital question: could we accelerate progress by working together across different oncogene lung cancers? Should researchers be looking at multiple oncogenes at once, rather than in isolation?
Those questions drove us to establish Oncogene Cancer Research. We were also fortunate to have two wonderful fellow patients – Cameron Millar, a passionate ALK advocate from Scotland, and Emma Bishop, a young mother in London living with EGFR lung cancer who raised significant funds for research – join us in the earliest stages of planning. Their dedication, insights, and passion for advancing research left a lasting mark on our mission. Sadly, both have passed away, but their vision continues to inspire and guide our work every day.
Oncogene Cancer Research received its charity registration in February 2024.
Given you and your co-founder Jan Clark are both connected to ALK+ lung cancer directly, why not simply focus only on ALK?
When we looked at the UK lung cancer landscape, we saw both a gap and an opportunity. In the UK, there are numerous support groups – a national general lung cancer group and biomarker specific support groups for ALK, EGFR, and ROS1. When it came to lung cancer medical research, there are only two small groups focused on fundraising for ALK research.
We have seen discoveries in one oncogene often open doors for others – so we saw a chance to accelerate progress by working across all oncogenes. In a country as small as the UK, that’s not just an opportunity – it’s a necessity. And for patients like us, there’s an urgency: we simply don’t have the time to wait.
ALK Positive’s own amazing past President Gina Hollenbeck felt similarly and co-founded the Biomarker Collaborative in the US with another patient called John Hallick who had MET-altered lung cancer. ALK Positive’s Dr. Ken Culver also frequently participates in multi-oncogene collaborations and discussions. So, we knew we were onto something truly meaningful when this idea took shape.
Research is just one area for collaboration. We want to see more lung cancer clinical trials in the UK – given today’s trials may be tomorrow’s standards of care. We find across all oncogene lung cancers the educational needs of patients and caregivers and need for advocacy are the same – no matter which biomarker you have.
We have no plans to ignore ALK – frankly many of our patient funders today are connected through ALK. We hope to win the minds and hearts of others across the oncogenes – we truly believe we can accelerate outcomes by working together.
Can you elaborate on Oncogene Cancer Research’s mission? What key accomplishments has Oncogene Cancer Research achieved since its recent founding in February 2024?
Our mission at Oncogene Cancer Research is to extend both the length and quality of life for people living with oncogene-driven lung cancers. We do this by focusing on three key areas:
· Empowering patients with knowledge and resources so they can make informed decisions about their care
· Championing advocacy to ensure the patient voice is heard at every level
· Accelerating progress by funding life-saving research, advocating in all stages from trial design to access, and pushing for more clinical trials to open in the UK
Given our organisation is pan-oncogene, we believe strongly in collaboration. We’ve worked with ALK Positive Inc, Young Lung Cancer Initiative and EGFR Resisters on various social media campaigns. We’ve built strong relationships not only with other biomarker and lung cancer
advocacy groups, but also with researchers and clinicians. We’re already involved in shaping clinical trials and research studies—for example, projects focused on cardiotoxicity and another through the prestigious Cancer Grand Challenges.
Jan and I have helped support the creation of a cross-biomarker tissue bank at The Institute of Cancer Research, securing about £90,000 ($120,000) in funding. This tissue bank will advance research into ALK and other oncogenes, including EGFR, RET, and KRAS. It’s incredible to know that with this initiative, we’re making more research possible right here in the UK.
What do you hope to accomplish next?
As a Board member of ALK Positive, I’ve been inspired by Dr Ken Culver, our Medical Committee and our Board’s commitment to investing not only in translational and clinical research, but also in projects with the potential to bring improvements to the patient bedside sooner. The tissue bank Jan and I helped to establish via Oncogene Cancer Research at The Institute of Cancer Research represents an important step in basic research—laying the groundwork for future breakthroughs.
But equally, we want to support research that could translate into meaningful benefits for patients within the next two years. Too many people with ALK+ and other oncogene-driven lung cancers don’t even reach the median progression-free survival (PFS) on their first-line treatment. We’re asking: how can we accelerate science now, to help those facing the greatest risk and the most urgent need?
In the immediate term, we are currently working to raise £100,000 to £150,000 so we can invite proposals from researchers and award seed grants for two small, promising projects. Jan has organised a fantastic charity ball that will take place on 1 November to open Lung Cancer Awareness Month for us.
We’ve also been working hard to identify a major cancer hospital in the UK to open the University of Michigan’s Judith Tam ALK Lung Cancer Research Initiative. In countries like the UK, it’s not as simple as signing a material transfer agreement—it’s more like launching a new clinical trial, with significant red tape and many steps involved.
In addition, we’re in discussions with several researchers about how we can support their trials – whether by acting as patient representatives to inform trial design and ensure the patient voice is heard, or by helping with recruitment and raising awareness.
We’re also committed to empowering patients and caregivers through education—equipping them with reliable, accessible information so they can make informed decisions, advocate for themselves, and feel less alone. In February, we ran a successful campaign highlighting the risks of cardiotoxicity from lung cancer treatments, because no patient should have to choose between fighting their cancer and protecting their heart. You can expect more initiatives like this in the
future. We’re also working with a few researchers to ensure the patient voice is represented in research and clinical trial design, shaping studies to reflect patient needs.
This is just the beginning. We are excited about what we can do directly and working with others. We also feel the responsibility to make a difference in extending the lives and quality of life for our lung cancer community.
Lastly, what message would you like to convey to our readers regarding the significance of Oncogene Cancer Research’s work and the importance of supporting its mission?
At its heart, Oncogene Cancer Research is about hope—hope built on science, collaboration, and the determination of patients and families who refuse to give up. Every day matters for people living with oncogene-driven lung cancer. This is a truth we feel deeply, especially after the loss of our friends Cameron Millar and Emma Bishop – and of course, other members of our lung cancer community.
We learn so much from other patient advocates and organizations – like Gina Hollenbeck, Jill Feldman, ALK Positive, Young Lung Cancer Initiative and other advocates and groups. The reality is that many patient-led groups are powered by volunteers – people just like us – who are balancing advocacy with their own treatments, caregiving, work, and family life. That’s why collaboration isn’t just important – it’s essential. With research funding becoming increasingly stretched, it’s clear we don’t just need to work harder; we need to work smarter. And working smarter means working together.
We invite our ALK-positive community members to follow our YouTube, Instagram and Facebook accounts and to join our private Facebook community. You can also find out more about us on www.oncogeneresearch.org.
Interview by: Duncan Preece
