My open-source cure for brain cancer
The responses have been incredible. More than 200,000 people have visited the site and many have provided videos, poems, medical opinions, suggestions of alternative cures or lifestyles, personal stories of success or, sadly, failures — and simply the statement, “I am here.” Among them were more than 90 doctors and researchers who offered information and support.
The geneticist and TED fellow Jimmy Lin has offered to sequence the genome of my tumor after surgery — in an open-source platform, of course. And the Italian parliament has been debating a motion to make all patients’ medical records more open and accessible, which would be amazing progress in my country.
Within one day I also heard from two different doctors, who recommended similar kinds of surgery. The first version is “awake surgery,” which monitors the brain in real time as different parts are touched. The second is a variation in which electrodes are placed on the brain during surgery, and then a brain map is produced (with the patient awake) and used during a second surgery (with the patient fully unconscious).
Blowback
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That’s the most absurd thing I’ve read lately. He’s creating “a cure” for cancer like Wikipedia created an encyclopedia that can be thought of as filled with truth. In other words, he ain’t.
Warner Todd Huston on November 26, 2012 at 10:39 PM
I am here, hope the poem I left you destroyed some
braincancer cells.tom daschle concerned on November 26, 2012 at 10:43 PM
Open source death panel. Cool.
faraway on November 26, 2012 at 10:44 PM
I certainly don’t want the government to know everything about my body nor the things I’ve told doctors over the years! There had better be a strong black-market for healthcare in the future because I don’t want the government getting their hands on my records. Next thing you know they’re liable to require shrinks report everything they hear to the US government. Luckily that won’t affect me, but the privacy of my medical records certainly does.
These are scary times we live in.
CurpliTium on November 26, 2012 at 11:00 PM
Never release your records, in any form.
Schadenfreude on November 26, 2012 at 11:09 PM
I loved this video; love this guy. How inspiring that Mr. Iaconesi put his brain tumor/medical records out into the universe to be turned into art installations, poems, and a working project for everyone from doctors to quacks to well-wishers with ideas for a “cure”. May he live long, and continue to prosper.
Ladysmith CulchaVulcha on November 26, 2012 at 11:16 PM
It must be an age thing that causes men to rage against the times. The handrails in this particular hallway seem pretty dusty.
Capitalist Hog on November 26, 2012 at 11:25 PM
R.I.P. 2013 Salvatore Iaconesi
Dack Thrombosis on November 27, 2012 at 12:03 AM
No moron, a cure is when they get rid of your disease.
***ing nitwits.
pedestrian on November 27, 2012 at 12:50 AM
This reads to me like a man who is scared of a painful future, and probably the knowledge that he won’t leave anything behind (I assume since he didn’t mention a wife or children, he doesn’t have any. His facebook status says he is in a relationship, but nothing else I could see). He if facing the possible end to his life, and he wants to leave something behind of himself. Since his particular hammer is “open source technology”, “curing cancer” became the nail.
My cousin died of cancer earlier this year. She was single, 31, and so very sad that she wasn’t able to be a wife and Mom. She had been dating a guy on and off for a few years, and decided to marry him 3 months before she died. All her life she had waited for the right man, she made the right decisions, and then was diagnosed and settled just so she could experience what being married was like.
At the end, she was afraid no one would remember her, that her nieces and nephews wouldn’t know her, and that her life had been in vain.
I hear echos of her painful words in this article.
cptacek on November 27, 2012 at 1:35 AM
How very sad. But since cancer is a thing that envelops all that you are–blocking out sunlight and the world when you receive that awful diagnosis, I understand both your cousin’s desperate move to marry and Mr. Iaconesi’s desperate move to show his brain tumor online and consult the whole planet.
My cousin, in her 30s had a double mastectomy and most of her lymph nodes removed. Bald, frail, bag of bones, she was nothing like the bold amazon who got into the movie “Cleopatra Jones” for free because she was 6 feet tall like the film’s hero.
Here’s the beauty part of your story. Your cousin married because she feared she wouldn’t be remembered. Yet here you are, cptacek, her cousin, telling us all that she was here. Quite a legacy, and her legacy is you!
Ladysmith CulchaVulcha on November 27, 2012 at 1:58 AM
:’) Awe, thank you. That was very nice of you.
I do understand her desperate move, and his instinct as well. I wish she hadn’t had to face that terrible scourge. I watched her starve to death because she couldn’t keep anything down, and the last time I saw her, three days before she died, she was still joking around with me. She was beautiful and strong to the end.
cptacek on November 27, 2012 at 2:07 AM
Like the old saying goes: too many cooks spoil the broth, but a million random poets can cure cancer.
Does anybody remember the “Moronic Convergence”, where a bunch of moonbats got together to chant for an end to war? This is a higher-tech version of the same thing.
logis on November 27, 2012 at 9:47 AM
May God comfort you. I have lost family and friends to versions of this scourge, and understand well what you wrote.
GWB on November 27, 2012 at 9:49 AM