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No Word, Media Relations [Linnea Olson Hackathon]

Thanks for your continued interest and support for Linnea Olson.


Linnea didn’t join our weekly update call on Friday, and she has been quiet on her blog for over a week, so I don’t have much to report. And I’m concerned.

After my cancer diagnosis, many of my friends get worried when they don’t hear from me in a while. Now the shoe is on the other foot.


As happens with the weekly calls, who shows up influences what we talk about. John Novack and Gail Thornton were on and we talked about media relations — the source of a lot of energy that feeds participation in the hackathon.


In addition to Linnea’s and other patients’ stories and the novel crowd helping them through the hackathons, by pushing the envelope of traditional practices, we’ve exposed and wrestled with a number of issues which we can share:


  • Tests and the issue of tissue: identifying the full range of testing options that were available to Linnea and prioritizing scarce tumor tissue among the many tests.

  • Treatment access: the hurdles that Linnea ran into and was able to overcome to get access to her best next treatment, thanks to the help of her oncologist and the ALK Positive community, among others.

  • Clinician engagement: challenges in collaborating between the hackathon and Linnea’s oncologists, as well as engaging all the expert clinicians we might have liked in Linnea’s treatment prioritization.

  • Proxies and backups: breakdowns in the ability of the hackathon community to help Linnea when she was incapacitated.


Our Requests

  • If you know people at media outlets (podcasts, journals, other publications) who might like to share our work and what we’ve learned with their listeners and readers, please introduce us. 

  • If you are interested in one of these topics and would like to contribute to an article, please let us know.


Best,

Brad


<no video this week>

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