Technology TED Fellows

Make art (or a cure) from my brain cancer, says TED Fellow Salvatore Iaconesi

Posted by: Emily McManus

“I have a brain cancer.”

Data artist and TED Fellow Salvatore Iaconesi posted these words this morning, along with a video of himself speaking. With his long ponytail reduced to a scruffy mohawk, he shares this story:

Yesterday I went to get my digital medical records: I have to show them to many doctors.

Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.

I cracked them.

I opened them and converted the contents into open formats, so that I could share them with everyone.

Read the full manifesto after the jump.

See Salvatore’s website to download everything in his medical files — his CT scans (labeled in Italian “TAC”), MRIs (labeled “R.M. 1″ and “R.M. 2″), lab notes and his medical records and diagnosis of his glioma — and take a look. The images above are two TAC or CT scans.

In cracking his medical files and opening them to the world, what’s he hoping for? An open-source cure. And he means a cure of any kind:

There are cures for the body, for spirit, for communication.

Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.

Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.

See the website to download his CT scans, MRIs and notes — and do what you will.

Salvatore Iaconesi’s manifesto from http://artisopensource.net/cure/

Rome, September 10th 2012

I have a brain cancer.

Yesterday I went to get my digital medical records: I have to show them to many doctors.

Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.

I cracked them.

I opened them and converted the contents into open formats, so that I could share them with everyone.

Just today I have been able to share the data about my health condition (about my brain cancer) with 3 doctors.

2 of them already replied.

I have been able to do it because the data used open, accessible formats: they have been able to open the files using their computers, their tablets. They have been able to reply from home, on sunday.

I will progressively publish all the replies I will receive, using open formats, so that anyone with my same disease will be able to benefit from the solutions I will find.

This is a CURE. This is my OPEN SOURCE CURE.

This is an open invitation to take part in the CURE.

CURE, in different cultures, means different things.

There are cures for the body, for spirit, for communication.

Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.

Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.

Create your CURE using the content which you find in theDATI/DATA section here on this site, and send it to info@artisopensource.net.

All CURES will be displayed here.

Comments (31)

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  • Katya Koganova commented on Dec 20 2012

    Hi…Great post and the following comments! In order to discover a cure for cancer medical research needs to take place and accelerate in its advancement. Unfotunately, in the United Stated the dreaded “fiscal cliff” is threatening to cut biilions of dollars to go into research. This is where cureLauncher.com comes in. This interesting approach utilizes the power of the people to empower the advancement of cancer research. Recently, LIVEstrong has shown strong support for CureLauncher. Take a look at the following post: http://blog.livestrong.org/2012/12/07/crowdfunding-the-cure-2/ . What do you all think? Can we crowdfund medical research? http://www.newstatesman.com/business/2012/11/can-we-crowdfund-clinical-research

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  • cynthia azma commented on Nov 26 2012

    Common spice shrinks

    81% of brain tumors

    Last week, I showed you how a spice mixture containing cinnamon, turmeric, and several other spices can lower your triglycerides and your insulin levels. Several of these spices have been in the news a lot lately. But one of them in particular — turmeric — is really making headlines. This week, I’ll show you how this one spice can fight brain tumors. And I’ll show you how to make it work even better.

    The Journal of Nutritional Biochemistry recently released the results of a study on turmeric and a specific type of brain cancer. The fatal brain cancer is known as glioblastoma (GBMs). In this study, the researchers divided 22 rats into two groups. They gave one group turmeric and the other remained untreated. At the end of the study, the researchers found that 9 out of 11 of the turmeric-treated group had their tumors shrink. At the same time, the control group had zero tumors shrink. Imagine that — 81% of the turmeric-treated tumors shrinking compared to 0% in the control group. That’s about as convincing as you’re going to get!

    What’s more, the turmeric caused zero toxicity in normal cells. The researchers said this suggests “that curcumin selectivity targeted transformed (i.e., cancer) cells.”

    But this news gets even better. The researchers also found that the turmeric worked synergistically with two different chemotherapy drugs used on GBMs. This enhanced the elimination of cancer cells. This is very exciting, as doctors have long told patients to avoid nutrients during cancer treatment, as they may help the tumor. But this particular nutrient does just the opposite. It works with the chemo to destroy the tumor.

    This study clearly identifies turmeric as a powerful anti-cancer treatment for GBMs. But it’s likely turmeric will help with any cancer. Turmeric has the ability to lower inflammation. And inflammation is a major problem with any cancer.

    If you have any cancer, talk to your doctor about adding turmeric to your anti-cancer regimen. It could save your life. If you want to lower general inflammation and help prevent possible tumors, consider trying Reduloxin. This supplement has an advanced form of turmeric called Meriva. Meriva is significantly easier to absorb than normal turmeric, which can be difficult to absorb. This makes Meriva work up to 29 times better than your typical turmeric.
    (taken from http://www.newresearchfindingstwo.com)……..I’m currently taking Europharma Curamed for joint pain & found this along with my research into benefits of turmeric, and when I read about you, I thought I’d pass this along!! God Bless!!

  • Pingback: The latest on Salvatore Iaconesi: the continued momentum of open-sourcing cancer cures | Krantenkoppen Tech

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  • Heather Paul commented on Sep 28 2012

    Hello,

    My husband was diagnosed with Brain Cancer 2 years ago. Your Ted post inspired me to get this story for you. October is Brain Tumour awareness month, so I’ve posted it to YouTube to make as many people aware as possible.
    Awareness builds the path to a CURE.

    I have nothing but hope for you.

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