Jay Lake (jaylake) wrote,
Jay Lake

[cancer|personal] The final hours of the fundraiser, pushing for a strong close for SCIENCE!!!

I was going to post a concluding summary about the Acts of Whimsy fundraiser this morning, but I see the effort is still open in its final hours. We're pushing for a final $50,000 stretch goal, and we're pretty close.

The original goal was $20,000, but I've already exceeded that amount in funds spent or committed to medical needs. The overage is very much to the point, and going to good use. Trying to keep me alive a few more years seems pretty worthy to me, but of course I'd think that. Also, SCIENCE!

Among other things, I appear to be one of the first patients to ever commission the genomic testing and analysis on a private basis. Possibly literally the first. Up until no, it's been an experimental process. And it's still expensive. Tests that will be less than a thousand dollars in a couple of years are still five or ten thousand or more. We paid $13,000 for the primary genomic sequencing. We'll pay about another $7,000 for the RNA sequencing that the analysis group recommended. Plus there's exome sequencing, though I think we'll get that data from the original run.

But in me doing this, and in all of you funding this, we're making it easier and more useful for the next patients who need it. I'm already a statistical outlier in a number of ways, from some of my unusual drug side effect responses, to my notable longevity with my type of cancer — the vast majority of my cancer cohort are either cured or dead at this point, while I've expressed between three and five generations of metastasis, depending on how you count them.

Whether or not we ever find s cure, this fundraiser and the efforts it is paying for are helping others survive. We are blazing a path and even teaching doctors as we go.

So for that, I think we should all be thankfully proud.

Tags: cancer, fundraiser, health, personal, science

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