Jay Lake is an award-winning American author of ten science fiction novels and over 300 short stories. He is also one of more than a million Americans who have colon cancer. Diagnosed in April, 2008, Jay's cancer has progressed from a single tumor to metastatic disease affecting the lung and liver, recurring after multiple surgeries and chemotherapy courses, and multiplying from single tumor presentations to multiple tumors presentations. Jay is now in his fourth round of chemotherapy, but it's not clear that it's working, and his doctors have little to go on in terms of advising further courses of treatment for him. In short, things are not looking good for Jay. Not at all.
However, a new technology is becoming available—one that may offer his doctors a better option for treating the cancer. We're trying to raise funds to allow Jay to have whole genome sequencing. There is a small possibility that the results of such a test, which is more comprehensive than conventional genetic testing of tumors, may suggest a treatment path that Jay's doctor's may not have considered, and that could be life saving. It's a really small chance, and Jay knows that.
For this fundraiser, we have asked some science fiction and fantasy writers to donate an "Act of Whimsy" which they will share with the community as we reach milestones in our fundraising.
The Acts of Whimsy
With each milestone in the fundraiser, donors and the larger community will be treated to an Act of Whimsy that has been unlocked by your pledges.
- $2000 -- The Juvenalienation: NYT Bestselling author Tobias S. Buckellwill crack open a locked box containing his oldest, complete first short story, typed out on cracked, yellowing paper and hidden away in shame lo these many years. Written when he was fourteen, it is full of embarrassingly awkward writing that he will turn into an eBook as a reward for anyone who donates. GOAL UNLOCKED! Read Toby's first story.
- $3000 -- Malt-O-Vision:hang out with NYT Bestselling author Tobias S. Buckell on a Google Plus hangout as he drinks his favorite scotches and answers questions and chats about... well, you bring the topic! The 1st five people to donate $100 or more get a seat in the Hangout. GOAL UNLOCKED!
- $4000 -- Hugo Award-winning author and voice actor Mary Robinette Kowalwill read selections of beloved classics as phone sex. GOAL UNLOCKED! Watch the video of Mary reading.
- $6000 -- Hugo-award winner Jim C. Hineswill read excerpts from his very first completed story, which was a 50,000 word novel about his Dungeons & Dragons character, a purple-clad elf named Nakor. (That's right, his D&D character was blatantly ripped off from Raymond Feist's work.) But that's not all! He'll do the reading in costume, dressed as Nakor, and will post the video for all to see and mock! GOAL UNLOCKED! Watch the video!
- $7000 -- Best-selling authors Scott Lynch & Elizabeth Bearwill perform a sock puppet show of one of Jay Lake's short stories. gOAL UNLOCKED! Sock puppets video.
- $8000 Seanan McGuire Filking BonusGOAL UNLOCKED!
- $9000 -- Hugo-award winner, writer for Doctor Who and novelist Paul Cornellwill try to sing Kate Bush's "Wuthering Heights" Watch the video.
- $10,000 -- Best-selling author Cherie Priestwill present a steampunk/goth fashion show for pets with the able assistance of her cat Spain and her dog Greyson. GOAL UNLOCKED! Link to steampunk pet fashion expo.
- $12,000 -- The creators of the Jay Lake Documentarywill unveil a comic short for Jay and you. GOAL UNLOCKED!
- $15,000 -- NY Times Best-selling author and Hugo award winner John Scalziwill sing a lost Bob Dylan song, in the style of Bob Dylan. GOAL UNLOCKED! Link to serious work of Dylanology
- $17,500 -- NY Times Best-selling author Patrick Rothfuss will unleash a "terrible surprise." GOAL UNLOCKED! The terrible surprise is an excerpt from Pat's high school novel,which includes a barbarian, a dwarf, and a Cat-Man samurai
- $20,000 -- NY Times Best-selling author Neil Gaiman will perform a cover from the Magnetic Fields album 69 Love Songswhilst accompanying himself on the Ukulele. Every donor of $50 or more will be entered in a drawing to choose the song that Neil sings. GOAL UNLOCKED!
We set the goal at the bare minimum to get Jay this chance for treatment, but there are tons of other expenses not covered by his medical insurance. Thanks to the generosity of the community, we have some amazing stretch goals coming.
- $25,000 -- Award-winning author Seanan McGuirerewrote all of season one of VERONICA MARS as a Shakespearean tragedy. Which counts as transformative. She is assembling a small cast to record the closing sequence from the final act of "The Tragedy of Lillian Kane, Princess of Neptune." GOAL UNLOCKED! Download the radio play.
- $30,000-- A radio play adaptation of one of Jay's short stories. GOAL UNLOCKED! Casting details are being finalized now.
- $32,000 -- C.E. Murphyrereads her first novel. She will open the file for the first time in twenty years and read excerpts aloud while offering commentary to her 19-year-old self, all live and first-reaction-on-film, for your entertainment and, she suspects, to her own utter horror. GOAL UNLOCKED!
- $35,000 -- Cory Doctorowwill release a a CC-BY scan of his head while recreating any funny expression that John "Rubberface" Scalzi can photograph himself making, and post a 3D scan doing so. That's right, a scan of Cory's head that you can create even more whimsy with. GOAL UNLOCKED! Help John Scalzi choose Cory's face--er, just click this link it will make sense when you get there.
- $37,000 -- Howard Taylerwill draw a picture of Jay Lake kicking cancer's ass. There may not be actual kicking, or an actual ass, but by the very loosest definitions of all the words in that sentence (and a pretty tight definition of "I will draw a picture") that's what you'll get. GOAL UNLOCKED The drawing. Time lapse video of the drawing process.
- $40,000-- Everybody plays! If you've been wanting to commit an Act of Whimsy for Jay, create one and post a link to it in the comments thread here. One of these whimsy creators will be chosen to receive a genuine Jay Lake Hawaiian shirt. GOAL UNLOCKED
- $42,000 -- NY Times Best-selling author Steven Gould will run for SFWA president! GOAL UNLOCKED
- $44,000 -- Video, "How to Write Like My Dad" by Bronwyn Lake GOAL Unlocked. Video
- $46,000 -- Klingon language expert Lawrence Schoen will present Five Pick-Up Lines Used in Federations Bars by Klingons GOAL UNLOCKED Klingon Pickup Lines
- $50,000 -- A cookbook featuring Bronwyn Lake's friends and favorite authors. Plus, Tobias Buckell will shave his head.
- $100,000 -- Jay! The Musical!
More Details about Whole Genome Sequencing
Whole genome sequencing can be used to compare the entire gene sequence of a cancer cell to the sequence of a normal cell. It's a more thorough genetic analysis than those available in leading cancer centers, and there's some precedent for it as a lifesaving diagnostic test.
The first complete human genome sequence was completed by the National Human Genome Research Institute and Celera Corporation in 2003 at a cost of over $3 billion. Since then, the technology has been rapidly streamlined for application to the research market, and the cost has fallen exponentially year upon year.
In July 2011, genetics researchers at Washington University in St. Louis decided to put their research sequencers to work to try to save their research colleague, Lukas Wartman, who had been diagnosed with acute lymphoblastic leukemia—the same cancer he was studying.
They identified a gene that was causing the cancer cells to grow out of control, but it was a gene normally connected with kidney cancer. Fortunately, there was a drug that had been tested and approved to target that gene, and Wartman's cancer went into remission when he was treated with it.
The basic cost of the sequencing today is $10,000. Expedited service for an additional $3000 will cut the 90 day turnaround time to between 30 and 45 days, which could make a crucial difference for Jay's rapidly progressing cancer. Analysis will cost $5000 to $7000 more, so we are looking to raise $20,000 to sequence Jay's cancer, in the hopes of duplicating the Wartman success.
There are no guarantees. Far from it. This is a slim chance. Jay's cancer has bounced back after aggressive treatment with the most advanced first-line, second-line, and salvage therapies available. It's possible the sequencing will turn up no new information, or that new information will emerge, but there won't be an effective treatment for it.
However, even if Jay's sequencing fails to turn up the answers we are all hoping for, his sequence will make a substantive contribution to science and the new field of clinical whole genome sequencing, His experience may help others, or may pave the way to save another life in the future.
In the event that Jay's costs are less than expected, or that funds are raised in excess of his costs, those funds will be used to support a much-needed leave of absence for Jay, who has worked steadily through all of his treatment, so that his body has the best possible chance of recovery, and so that he can spend time with his family.
Contact the organizers:
Catherine Shaffer and Mary Robinette Kowal