I'm sorry to report that Linnea Olson died on November 15, 2021. I'm sending this message to you and the roughly 100 people who participated in Linnea's hackathon from April to September this year. This is a sad outcome that I had feared since Linnea's last blog post on September 25. For those of you who followed Linnea through her hackathon, you may know that she had chosen a SHP2 clinical trial that wasn't effective, and then through the work of her oncologists and many in the ALK positive community, got access to a 4th generation ALK inhibitor from Turning Point in record time. It worked for a while, then she had neurological side effects that knocked her out of her N-of-1 clinical trial, and put her in a rehabilitation facility. Then she was able to return home, but was silent. In keeping with the power of the community we assembled to help her, I was notified by a number of her friends today who saw the news on Facebook: Bryce Olson, John Novack, T.J. Sharpe, Erika Brown. Bryce: "I hate seeing friends pass from this awful disease ... It just sucks."
John: "I'm numb, ... Strange, but her death has stunned me, so this one hurts. I rewatched [15-minute TEDx talk], which took place just days before her 60th birthday. I was fortunate to be in the crowd, and be invited to be part of a celebratory lunch after the TEDx talk."
Erika always cautions me to remember that when it comes to cancer, we don't talk about "a cure". Erika is more experienced than I am in these unfortunate passing of friends. These are relationships we develop because of our connection through cancer, which raises the probability that these friends will die.
We need to look on the bright side. Linnea was a positive beacon, a role model of an active patient who (as she says in her TED talk) wasn't afraid to die, but would always choose to live. I, and I trust everyone who saw her, was inspired by her courage and articulate description of her philosophy. I am grateful to her for all I learned during the hackathon, including about the challenges of choosing life (the issue of tissue, the need for proxies, leveraging a community of fellow patients, and clinician engagement), but even more about how to lead a noble and heroic response to a difficult diagnosis and repeated setbacks. Best, Brad Other than the many weekly Zoom meetings we held, I will remember Linnea as I recall her in our conversation in person at MGH during the pandemic: