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Lakeshore - [cancer] The fundraiser in retrospect
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Jay Lake
Date: 2013-02-14 05:07
Subject: [cancer] The fundraiser in retrospect
Security: Public
Tags:cancer, friends, fundraiser, health, personal
Wow.

That's all I can say.

Wow.

Yesterday, the Acts of Whimsy fundraiser closed. $48,665 was raised from 1,331 supporters. Donations ranged from $1 to $500. (More on this below.) The unlock levels were multitudinous and hilarious, and too many to list here, but my thanks to everyone who threw themselves into this, both formally up front and informally along the way. My most special thanks to Mary Robinette Kowal and Catherine Shaffer for organizing and managing this thing. They are amazing human beings and dear friends.

As you probably are aware, the point of this fundraiser was to meet my expenses for genomic testing of my tumor tissue. I've had colon cancer for almost five years, and been through four (or five, depending on how you count them) generations of metastasis since then. These are increasingly frequent and increasingly aggressive events for me. In the time since the fundraiser was launched, I've been diagnosed as incurable — not terminal yet, but that's the next step. Genomic testing gives us opportunities for both life extension and the slim but not vanished possibility of a cure.

What the genomic testing and subsequent clinical analysis do, specifically, is identify genes or gene sequences that are overly active, and may be associated with tumor formation and tumor growth. An example of this is the PTGS2 gene responsible for COX-2. The clinical analysis then involves a second step of identifying pharmaceuticals that engage those suspect genes as therapeutic targets, much as with COX-2 inhibitors. That can suggest lines of treatment to my oncologist that may lie outside the normal clinical guidelines for my type of cancer. As I've essentially outlived those guidelines already — most people in my cancer cohort are either cured or dead after five year — this is important. My cancer is obvious refractory to chemotherapy (meaning it laughs at the drugs and carries on), and based on the genetic information we extract, may not even be colon cancer at all, but something else masquerading as colon cancer. So we'll reach into both the oncological pharmacopeia as well as the wider world of pharmaceuticals looking for potential life extenders and life savers.

It's a new technology, built on some pretty new science, so my going through the process is also part of the validation of this testing as a clinical best practice. In other words, your funds, spent through me, are benefiting SCIENCE!, as well as future cancer patients. My life might be spared, or at least eased before my passing, but this will also help millions of others.

I commented on this yesterday, but just to give an update on how the money is being spent:

  • 5%, or roughly $2,400, will go to charities or other fundraisers. I've already regifted $850 of that amount.

  • $13,000 has already gone to the primary sequencing effort now nearing completion in the lab.

  • Up to another $1,000 for fulfillment expenses associated with shipping the 100s of GB of data generated by this testing.

  • $7,000 budgeted for RNA sequencing, which is a separate type of testing that may yield additional pharmaceutical options.

  • $2,500 to meet the direct out of pocket costs for my third liver resecting, last month's surgery.

  • About $1,000 more to meet co-pays which are exempted from my insurance carrier's out of pocket limitations.

  • $5,000 set aside to make up income shortfalls from future rounds of Short Term Disability which I will likely take this year.

  • The balance of the funds will be held in reserve pending identification of additional extraordinary expenses not covered by health insurance, and to provide me with the opportunity to take some time off with my loved ones as possible.


One final note I wanted to make was about the donations. I am grateful to everyone who gave, at any level (or in some cases, frequency). But in a sense, I'm most impressed by what the political types call the "small dollar donors". Anyone who clicked to send me $1 or $3 or $5 is someone who probably needed those dollars more than I do. For hundreds of people to engage at that tells me something about how much love and generosity there is in our genre community.

Thank you all. From the bottom of my heart.




If you missed the fundraiser, but still want to chip in, there is a Tip Jar link on the top left corner of my home page.
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Elizabeth Coleman
User: criada
Date: 2013-02-14 15:13 (UTC)
Subject: (no subject)
I'm curious, would you be willing/able to put your genetic data out under a creative commons license or something? Or does the info officially belong to the testing company. (Basically, I'm wondering about the logistics of such a thing.)
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Jay Lake
User: jaylake
Date: 2013-02-14 15:59 (UTC)
Subject: (no subject)
(1) Yes
(2) I do not believe it belongs to them
(3) I have no idea about the logistics yet

But yes. ;)
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mlerules: Maypole
User: mlerules
Date: 2013-02-15 06:58 (UTC)
Subject: (no subject)
Keyword:Maypole
:-) I think I can safely say from all of us: you are most welcome. ox
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Xiphias Gladius
User: xiphias
Date: 2013-02-18 13:07 (UTC)
Subject: (no subject)
I deeply, deeply hope that this not only improves your life, but that what is discovered in studying you leads to advancement of knowledge in general, and helps all of humanity.
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