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 (32)

  • Andrew Good commented on Sep 13 2012

    Dichloroacetate(DCA) works really well on brain cancer. Browse the facts, science, and reports at http://www.thedcasite.com

    This isn’t some BS, unresearched drug. I’ve studied lots of so-called “cures” and they’re all lacking science and proper research.

    I would be very surprised if it didn’t slow, stop, or reverse your cancer.

  • Pingback: khriss.com Salvatore Iaconesi combatte contro il tumore attraverso l’open source | khriss.com

  • Teresa Theriot commented on Sep 11 2012

    Have you seen anything about this doctor? He seems to be curing cancer in an unconventional way. I nearly died at the beginning of the year…unconventional treatment is what saved my life: http://www.burzynskimovie.com/

  • Richard Streeter commented on Sep 11 2012

    Do this as a Routine every day for about 4 weeks to see increased Improvements

  • Richard Streeter commented on Sep 11 2012

    Also, Place 4 Drops Of frankincense essential oil on your tongue at night.

  • Richard Streeter commented on Sep 11 2012

    Frankincense essential oil passes the Blood Brain barrier.

    Put 12 Drops of frankincense essential oil in 500mls Of Pure Water, Shake The Bottle Until it Fragments and become Milky In Colour. Drink 1 Bottle On an Empty Stomach At Night.

    Frankincense essential oil passes the Blood Brain Barrier. it Closes Down the Cancer Cells.

    Their is No Harm in drinking this Solution, Your Body eventually Tolerates it that you can Increase the drops.

    Try It Now. Frankincense boswellia carteri ( Oman frankincense oil works best )

  • Pingback: Cancer – cure or creativity needed. — creatingclever.com

  • Pingback: Salvatore Iaconesi combatte contro il tumore attraverso l’open source | Indipedia – Indipendenti nella rete

  • Pingback: TED fellow Salvatore Iaconesi: “My open source cure”

  • Massimo Mantellini commented on Sep 11 2012

    @Sam I think the sort of cracking Salvatore is talking about is not about his TC and RMN images (you are right, Dicom is a standard) but concern his hospital documentation that he received in a closed format. (I don’t know why, yes, it’s crazy)

  • Rahul Varshneya commented on Sep 11 2012

    Please check our http://www.carctol.in. A herbal cure for all kinds of cancer and this post comes with a backing. My grandmother was sent home by the doctors after chemotherapy and had given her 3 months to live. All medications had stopped and we started on Carctol. She is still alive and it has been 8 years since. Doctors are flabergasted as to how the cancer has disappeared!

    Medical doctors will not accept this as it threatens their science and all that they have learnt. But I have a live case within my family. Having said that, this has been medically tested by doctors in the UK and they are even prescribing it to their patients. Do check it out for yourself.

  • Mathew Philip commented on Sep 10 2012

    Hello,
    In one of the comments Mr.Sam Hurley mentions that this cannot be considered “cracking”-True. DICOM is pretty standard in medical imaging and its open too. But whats is missing is, simple jpeg options for the patient where he can email or share the images with the people he wants to. In that way Salvatore has show a great example. Kudos.I think you should talk an online doctor at http://www.doctorspring.com. Or some similar online second opinion services – and post the replies in your site. That will be one more step in the right direction. Lets become consumers too, when we become patients.

  • Steve Ferguson commented on Sep 10 2012

    Research proton therapy and see if it is considered a viable option for your condition. Proton therapy is more precise and powerful than photon therapy (standard x-ray radiation) and, importantly, it minimizes the destruction of healthy brain tissue. Google proton therapy, Bragg Peak and Loma Linda University Medical Center Proton Therapy Center (first in the world with this modality of treatment). You may be able to avoid invasive brain surgery and its morbidity and mortality issues and still kill the tumor in its tracks. Good luck!

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  • John Shurr commented on Sep 10 2012

    I know what you are going through. My wife developed brain tumor and her treatment was brain surgery. Then the diagnosis came back with what was thought to be a menginoma (sp?) brain cancer. She was further treated with radiation. She refused chemo because she had seen what chemo did to her mom and chemo killed her mom before the cancer was eradicated.

    If it were me – I’d have surgery – remove as much of the cancer as possible without disturbing the brain too terribly. I would have radiation – with the latest technology to focus the radiation on the remaining cancerous areas (with this in mind – there may still be some damage because of the process that may effect memory, body functions, motor control, etc.) . I would take the chemo. I’d take acupuncture, I’d try homeopathic treatments, I’d try everything that is out there – with my “team” of doctors and technicians and herbalists collaborating so one treatment didn’t cancel out the other.

    I would do one other thing – I would write about it from my perspective. Doctors are scientists, technicians are scientists, herbaligists are scientists. But no one knows better how the treatments and quality of life is, except the patient.

    [one more thing - my wife's cancer wasn't brain cancer after all. The cancer was in her liver - and it was ejecting cancer cells into the bloodstream. The brain was acting as a filter, and the cancer cells were collecting there. The tumor was the result of a sufficient number of those cancer cells growing to make a tumor. By the time this was discovered - the cancer had spread throughout her body. I would suggest you get a whole body MRI to see if the cancer is anywhere else. Treat the whole body - not just the obvious symptom place]

    I wish you much success in this endeavor,

    John

  • Pingback: TED fellow uses crowdsource approach to treat his brain cancer | Scope Blog

  • Walter Bebirian commented on Sep 10 2012

    I have sent you a link to the images that I have so far created in The Bebirian Art Collection – I sincerely hope that there is some help that you will find there – the amount of images – time that you spend amongst them as well as the frequency with which you return to view images that resonate with your own personal being depends strictly on yourself and how you are feeling – All the best with this project –

    Walter

  • Sam Hurley commented on Sep 10 2012

    First of all, I want to congratulate Salvatore for taking a proactive role in his own healthcare. This is something that more people should be doing, for things as seemingly innocuous as hypertension to as serious as brain cancer.

    I also think that he is pointing out an important problem facing healthcare today, that it is difficult to share information in an open yet secure way to facilitate second opinions, or even patient’s understanding of their own conditions.

    However, it is VERY inaccurate to say that he somehow “cracked” or “decoded” his CT and MRI scans. They are stored in an standardized format called DICOM, which is both a NEMA and IEEE standard. It is freely published on the web (http://medical.nema.org/standard.html). Also, any radiologist, physician, or technologist who is qualified to read radiological exams should already have the capabilities on their computer systems to read this images.

    I think this post raises a great issue and I do not mean any disrespect, I just wanted to add a clarification.

    • webchick bot commented on Sep 11 2012

      With all due respect, I believe the artist’s intent was to make the information readily available to all as part of his open source cure – not just to qualified medical professionals.