At the 2025 ALK Summit in San Diego, we were thrilled to announce the creation of the Spirit of Courage Award to honor the achievements of Colin Barton!
We are even more thrilled to name the Award after him, so that in following years, the Award is to be known as the Colin Barton Spirit of Courage Award, which will be awarded annually.
Why did we honor Colin with this award?
Read on…the list of his accomplishments for our organization is both inspiring and impactful.
In 2017, a few members of what was then a small private Facebook Group open only to ALK+ cancer patients and their care partners, at the time known as ALKIES (ALK Information Empathy and Support), and now known as the ALK Positive Support Group, saw a need to create a public-facing organization that would be able to fund and select ALK -specific research grants, as well as advocate for increased ALK+ research funding, more clinical trials for ALK+ cancer patients and greater awareness of ALK+ cancer.
They named this organization the Outreach Management Group (OMG), which later morphed into what is now the ALK Positive not-for-profit organization. Colin was one of the original founding members of that OMG.
The OMG created several committees (Medical, Fundraising, Legal, Communications, Financial, Summit), and Colin served on all of them.
Colin was selected as Chair of the Medical and Pharmaceutical Advocacy Committee (MPAC), which was later renamed the Medical Committee.
The OMG formed a Research Review Panel to review grant proposals together with doctors with expertise in oncogene driven lung cancer. Colin became the lead person for the Research Review Panel, which was put under the umbrella of the Medical Committee.
Fundraising for the first $200,000 grant (to be issued with the assistance of LUNGevity) started in late 2017. Nobody knew if $200,000 could be raised, and nobody knew if any researchers would apply for the grant. To push fundraising forward and encourage donations, Colin went out on a limb and offered a $100,000 matching donation. Colin then constantly and unceasingly promoted awareness of the fundraising efforts within the private ALKIES Facebook Group (at the time there was no website, no Newsletter, no ALKtALKs – that all came later). Before long the $200,000 target was reached!!
By the time the Grant Reviewers had reviewed the 14 grant proposals in early 2018, and narrowed the list to the top few, close to $400,000 had been raised! That was enough for two grants, but the Grant Reviewers felt there were THREE very promising research projects worthy of receiving a grant.Colin again took the lead by offering a Promissory Note (a personal guarantee note) promising to fund any gap between funds raised and the $600,000 needed for three projects.
Colin served as Chair of the Medical Committee for 5 years, from 2017-2022, and under his guidance expanded the number of Medical Committee members from 5 to over 20, and created new sub-committees within the Medical Committee, continuing to lead the Research Review Panel (now the Grant Review Committee), and adding the Registry Committee, the Research Acceleration Committee, the Clinical Trials Committee, and the Research Library Committee, all of which he managed until passing the baton on to others. He continues to be a core member of the Medical Committee.
In his role as lead for the Grant Review Committee, Colin not only served as a reviewer for the grant applications, leading to our funding several million dollars of ALK specific research projects that our organization has selected and awarded, but also was the lead person on the agreements and communications with the sponsoring organizations, LUNGevity, GO2 Foundation, and Lung Cancer Research Foundation (LCRF).
Colin served on the Board of Directors of ALK Positive from 2017 until 2022. On the Board, he was actively involved in all discussions, not just those related to the Medical Committee.
Colin was an integral member of the Legal Committee, helping design the By-Laws that have enabled the successful growth of the ALK Positive organization, as well as reviewing legal agreements between ALK Positive and other organizations. In the Communications Committee, Colin helped with details such as designing the organization logo, creating our mission statement (To Improve the Life Expectancy and Quality of Life for ALK-positive Cancer Patients Worldwide), and much more. As a member of the Finance Committee, Colin helped keep track of what was available for new Research Grants. As a continuing member of the Fundraising Committee since it was first formed, Colin is always thinking of new ways to boost our fundraising efforts.
Colin attended the first ALK Summit in Kentucky in 2018, and has attended every Summit since! For the 2019 (Atlanta), 2020, 2021 (virtual due to COVID pandemic) and 2022 (Denver) Summits, Colin spent enormous amounts of time serving on the Summit Committee, as he was responsible for everything on the Summit agenda related to Medical Committee activities, including inviting, coordinating and presenting with doctors, and was a presenter at the 2023 and 2024 Summits.
Colin has been representing ALK Positive Inc. on the Patient Advisory Board for the Lung Cancer Genomic Study, now supported by the TTAM Research Institute, a massive lung cancer research project studying the role of genomics (if any) in oncogene driven lung cancer.
Colin has traveled multiple times to represent ALK Positive at the Targeted Therapies Conference, American Association for Cancer Research (AACR) Annual Meeting and World Conference on Lung Cancer (WCLC) in California, as well as research related meetings in Washington DC and Texas, paying his own way for all trips and accommodations.
Colin has been the inspiration and driving force behind the ALK Life Study, creating the world’s largest longitudinal survey of ALK+ cancer patients. From this Study, one scientific paper has already been published in the Lung Cancer Journal (https://doi.org/10.1016/j.cllc.2025.05.009), with another paper about to be submitted, and likely more to come after that.
Colin was the Lead Author on a paper published in the Translational Lung Cancer Research (TLCR) in a special series on ALK-positive NSCLC ( https://tlcr.amegroups.org/article/view/76359/html). He has also co-authored other published papers and conference posters focused on ALK+ cancer.
Colin has been our largest financial donor to date, and has personally invested close to $1,500,000 in donations to ALK Positive Inc to date. Additionally, Colin has been leading the way in cultivating other large donors – including our second largest donor, also close to $1,500,000. Colin’s donations and fundraising have enabled us to fund projects that are now leading to clinical trials, as well as the hiring of Dr Ken Culver as the ALK Positive Director of Research and Clinical Affairs, and other essential staff.
Colin convinced the ALK Positive Board of Directors to create a full-time position of Director of Research and Clinical Affairs, and generated the funding for the position. Dr. Ken Culver was hired for the position after a recommendation from a member of the Medical Committee brought on board by Colin.
The inclusion of ALK+ cancer and the ALK Positive organization in the BreakThroughCancer project is a direct result of the efforts of members that Colin recruited into the Medical Committee.
The collaboration of ALK Positive Inc with the University of Michigan in the Judith Tam ALK Lung Cancer Research Initiative evolved from the efforts of Colin and other members that Colin recruited into the Medical Committee.
Colin presented 2 of the 5 episodes in the ALK101 video series when it was created in 2023, and has continued to actively promote the series.
Colin created the ALK Positive Second Opinion Program in 2018, led the program for the first few years, and continues to be a key member of this program.
As most of you would be aware, Colin has been a pillar of support for everyone on the closed Facebook Support Group, providing his learned knowledge to every new member as well as existing members.
Colin had no expertise in ALK or cancer research when he was diagnosed with stage 4 lung cancer in 2016. His massive list of accomplishments, of which we have highlighted just a select few, are the result of creativity, thousands of hours of hard work, and sheer determination that comes in the face of the adversity of that diagnosis.
Colin humbly states that “anyone could do what I do – and learn what I have. I am not a scientist or a researcher or an oncologist . . I am just a retired dentist.” Colin also modestly says “my greatest achievement has been my ability to find others smarter than I am to help expand our accomplishments”. Asked why he has committed so much to ALK Positive, his response is “when the time comes that I know it’s my last day alive, I want to be able to look back on my life and be proud of what I accomplished”.
We appreciate the humility and the message . . .But what we think is remarkable is that he did do it. He refuses to live passively with this disease. He refuses to stand on the sideline. Nothing without Courage.
Colin remains as committed as ever to our mission to Improve the Life Expectancy and Quality of Life for ALK-positive cancer patients worldwide, and to finding a CURE for ALK+ cancer.
Colin has been a rock! Our motivator, our funder, our dreamer, our coach and our mentor! … Plus he’s a damn good human and we are honored to call him a friend.
PS. An added bonus – Colin has promised us that over the coming months he will write about the growth and achievements of our ALK Positive Inc organization from his perspective.
We can hardly wait to see his story!
Authors: Kirk Smith (President) and Nancee Pronsati (former VP)
