linnea Olson Hackathon
Join the quest to find new treatment options for Linnea Olson
Linnea Olson is a well-known advocate for patients and a pioneer in clinical trials for lung cancer. She was diagnosed with non-small cell lung cancer in April of 2005. Linnea is a mother, artist, writer, friend, and adventurer. She refers to herself as a terminal optimist; someone who is living (each day to the fullest) with stage 4 lung cancer.
Instead of NED (No Evidence of Disease), Linnea says she’s NDY (Not Dead Yet). As her friend Bryce Olson (no relation) has said, “She brings the best in resiliency, cancer knowledge, and inspiration. She is the most followed lung cancer patient on social media. She’s a star who is loved by so many. She’s a brilliant writer.”
She is a guest lecturer at Harvard Medical School through their Executive Education program. She also consults for Medidata as a member of their patient design team. And she is on the board of the Israel Cancer Research Fund.
You can see her blog: Life and Breath: Outliving Lung Cancer
Her TEDx talk: ‘Patient, parent, person, research subject‘
And articles that have been written about her:
Linnea has gotten great advice from her expert medical team, but as someone who is very engaged with her treatment, she would like to leave no stone unturned in exploring all her possible options.
While she has learned to live with her disease as a manageable, chronic condition, she was just booted from her fifth phase 1 clinical trial (a MEK inhibitor combined with an ALK+ inhibitor, lorlatinib) due to retinopathy (eye damage). She is staying on an ALK inhibitor, whose side effects she tolerates, and then will rescan and also explore the possibility of enrollment in another phase 1 trial–this one a combo of lorlatinib and a SHP2 inhibitor. Her concern is that SHP2 is on the same pathway as MEK and has the potential for eye issues as well. She would love to have other possibilities for treatment. At 16 years, she is very far out on the skinny branches when it comes to options.
- To get Linnea a prioritized list of her treatment options that she can exercise in her next round of therapy, leveraging her rich trove of medical data.
- To learn from Linnea’s decisions and make the lessons from her decisions available to other patients and providers, and to publicize the crowdsourced, hive mind approach to problem solving to the health industry.
Linnea will make her extensive inventory of medical data available to a crowd of participants for analysis and insights.
Weekly video chats will update participants on progress and specific questions that will help channel the research. An online discussion forum will enable asynchronous review of progress and opportunities for comments. A recorded version of the weekly updates will be posted shortly after for those who are unable to attend.
Insights and recommendations will funnel into a global virtual “molecular tumor board” of leading lung cancer research oncologists and other experts. We expect this exercise will take about two months.
We plan to launch on Friday, April 9, and complete in early June 2021. We will then follow with additional research on ways to make this exceptional research, analysis, and community of leading researchers available to more people.
If you participate you should expect a culture of open participation, open data, and open results. You will be welcome to join weekly lightning update calls of 15 minutes on Fridays at noon Eastern, and an online discussion forum.
If you have analytical tools, you are encouraged to apply them and share your analysis. If you have specialist knowledge, you may participate in smaller discussions or in the molecular tumor board.
Lung cancer patients, pathologists, scientists, researchers, medical professionals, bioinformaticians, and oncologists with intermediate to advanced experience who would like to help Linnea are welcome to participate.
Please fill out the form to apply. You will then be invited to the weekly chats and online discussion forum.