Friday, March 1, 2013


Social media is going to bust this whole thing wide open.  I can feel it.  People are jumping on the bandwagon and it seems we are all jumping on wagons that appear to be headed in the right direction, the same direction.  I'm hopeful.

I've been out of commission the past few days.  I'm in the midst of an organization project that may work.  It involves post it notes and color coding and if I can FOCUS long enough to finish the actual organizing and then implement it, I'll share my "invention."

Lots has happened and I'm slacking in my reporting.  First:  The really big stuff.  Research funding.  Although the deadline for sequestration is midnight, I'm off that horse for the moment.  I must take a moment to commend the very young, very wealthy and VERY philanthropically minded folks at Facebook and Google.  Yuri Milner, together with Mark Zuckerberg and Sergey Brin and their respective spouses are the founding sponsors of something called The Breakthrough Prize in Life Sciences.

Yuri Milner is a Russian self made entrepreneur who is worth billions.  He is quoted as saying that scientists are underappreciated as people who are making significant contributions to our everyday survival.  See for yourself in this write up in MIT Technology Review.  The subtitle says it all.  Is he after a cure for cancer?

Exactly what did these folks do?  They handed out eleven awards in the amount of Three Million Dollars each.  The researchers who were the recipients of these awards will select future winners.  The goal is to recognize excellence in research aimed at curing intractable diseases and extending human life.  Five awards of three million dollars each will be presented each year.  Nominations may be made online and although they are not yet open, it appears anyone can nominate a researcher.  It sounds very UNelitist, very transparent and very promising.

This was all old news.  In social media time, yesterday is ancient history.  So what's the latest with the Face-Google-Book crew?  They weren't finished by just turning over 30 Million dollars.  Now, they have their techies collaborating with a bunch of others, this very weekend, to develop a mobile game that they hope will speed the search for new drugs.  We will all be turned into "citizen scientists."  They are calling it Game Jam, it's taking place in London and they hope to launch an app by mid year.  Everyone: Get on board.

Time for a new way of doing things.  We've been at the War on Cancer for over forty years.  It's time to lose the muskets, step out of the 18th century and make way for the smart bombs.  Here's what's on tap in London with Cancer Research UK leading the way.  I like the way this sounds.  Read on and see what you think.... I'm sending good vibes across the Atlantic.....And, I'm looking forward to being part of a flash mob that hacks a solution to this mess.

Thu, Feb 28 2013
LONDON (Reuters) - Scientists from a British cancer charity are teaming up with technology gurus from the likes of Amazon, Facebook and Google to design and develop a mobile game aimed at speeding the search for new cancer drugs.
The project, led by the charity Cancer Research UK, should mean that anyone with a smart phone and five minutes to spare will be able to investigate vital scientific data at the same time as playing a mobile game.
The first step is for 40 computer programmers, gamers, graphic designers and other specialists to take part in a weekend "GameJam" to turn the charity's raw genetic data into a game format for future so-called "citizen scientists".
"We're making great progress in understanding the genetic reasons cancer develops. But the clues to why some drugs will work and some won't are held in data which need to be analyzed by the human eye - and this could take years," said Carlos Caldas at Cancer Research UK's Cambridge Institute.
"By harnessing the collective power of citizen scientists we'll accelerate the discovery of new ways to diagnose and treat cancer much more precisely."
After the GameJam, which runs in London from March 1-3, an agency will build the game concept into reality and the team plans to launch it in mid 2013.
Cancer already kills more than 7.5 million people a year and the number of people with the disease worldwide is expected to surge by more than 75 percent by 2030, according to the World Health Organization's cancer agency IARC.
CRUK's scientists are working hard to identify the genetic faults that drive cancer to try to find new ways of diagnosing and treating patients in a more targeted way based on their genetic profile and that of their tumors.
In a major international study on breast cancer genetics published last year, CRUK researchers said they are now able to classify the disease into 10 subtypes - a finding that could lead to more accurate and tailored treatment in future.
That study also found several completely new genes that drive breast cancer, offering potential targets for new types of drugs.
Yet this type of research generates colossal amounts of data that need to be analyzed, CRUK said as it announced the gaming project. And while advances in technology mean scientists can process data faster than ever, much of it still needs to be analyzed by people rather than machines.
"The human eye can detect subtle changes that machines are not programmed to look for - leading to serendipitous discoveries providing clues to the causes and drivers of the disease," the charity said.
"With the collective power of hundreds of thousands of people across the globe helping our scientists to analyze this data we could drastically speed up research."
Philip Su, engineering site director of Facebook London said his company believes the best way to solve a problem "is to bring smart people together to 'hack' a solution."
"That approach is just as valid in the field of life sciences as it is in software engineering," he said.
(Reporting by Kate Kelland)


  1. Great post I just hope that they understand who they are going up against. Do they really think the US government, FDA, drug companies, ACS and NIC are going to allow any type of cure that would wipe out a $200 billion industry? It's way too profitable to allow any type of competition. Imagine if they had a cure? Komen, Avon Foundation, ACS, NIC all these drug companies would be gone over night. They will never allow it.

    1. I know cancer is Big Business but I must choose to believe things can change.

      My mother's life and my daughter's future depend upon some sort of meaningful progress. Many months ago, I wrote about the fact that I had nearly identical treatment in 2006-07 as my mother received with her first diagnosis in 1987. Even though breast cancer is touted so triumphantly, at the core, very little has changed.

      There's enough work to be done to last several lifetimes and no one thing is going to be a magic bullet for all. I do think we can chip away at this slowly and there will still be plenty of money in it for all of those in this "game."

      The pain meds for my jaw are definitely clouding my thought process so I'll just shut up before I start to say things that make absolutely no sense.....

      I appreciate your willingness to share your thoughts.... thank you.... and yes, it is something to think about.


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  3. I'm leaving the anonymous comment up even though it's spam.....

    There's a good chance I will have to either moderate all comments (not a great idea since I don't need to add another "thing" to the ToDoList), add the "prove you're not a robot" box which I don't like, stop anonymous comments (I HATE that idea as I like the fact that people can post anonymously)...

    I'll spend the weekend thinking about it.... Stupid spammers....

  4. dear anne marie,

    i found your post today so exciting, mind-boggling (in a good way), and a real reason to be on board with HOPE. i especially liked the sentence you wrote beginning with "it's time to lose the muskets...". wow, if that's not a call to 21st century thinking i don't know what is!

    so glad you are able to feel relief from the pain. i'll keep the good vibes coming for the duration.

    love, XOXO,

    karen, TC

    1. Thanks, Karen...

      This stuff excites me, too. I swear when they open up the nominations, I'm throwing that young man's name into the hat. Jack Andraka. If that kid could come up with something so innovative using "google" and daydreaming about chemistry in his biology class, I'd bank on him in a heartbeat.

      Love and hugs as always,


  5. I am high-fiving and shouting yes! reading your post today Anne Mare. I share your sense of excitement at the possibilities that social media, tech and everything else that goes up to make health 2.0 so incredibly empowering and transformational in the cancer world and other healthcare fields.

  6. oops I was typing in such a fever of excitement I spelled your name wrong *face palm*

    1. I usually blame my typos on a sticky keyboard....

      Considering it was YOUR name you mistyped..... :)

      Thanks for sharing this blog in your Round Up.....

      You changed the course of my life, Mare ... ooops! I mean, Marie...


  7. I think you're right, AnneMarie. You know, Big Pharma may not want it--but scientists do. Scientists--good and committed ones--don't recognize political, social, or economic boundaries. They only want to recognize the science. It is possible to break down formidable barriers and join good science with public awareness and demand. Not easy, but nothing worthwhile ever is.

    1. The scientists do.

      And that's the truth. I had the absolute honor of meeting some of the scientists when I sat on a grant review panel and they are dedicated and devoted and BRILLIANT. They treated me, a non-science person who felt like my brains were dribbling out of my ears as an equal. They wanted to hear from us, the patients. That was one of the most fulfilling experiences and I came away hopeful. And determined....

      Nothing worthwhile is ever easy, AND nothing is impossible. I believe that. Dogged determination and voices that will continue to make noise can make a difference. I believe that, too.

      Don't forget: palindrome day.... a date in the making....


  8. I've definitely benefited from the work of scientists at Genentech. They have been working on T-DM1 since 1999 and convinced management that targeted antibodies could work to combat breast cancer. I thanked personally the scientist who developed that drug, because I think I would be dead now without it. And that is not an exaggeration. So kudos to those who spend research money to come up with new drugs. It takes forever to get them on the market, so let's keep going. xox

    1. I left a comment on your blog and welcome back, my dear friend.

      I knew you were in a study because you told me in our email but I didn't know it was TDM-1... and I am so damn excited to know someone who played a part in getting this drug approved by the FDA.

      I've missed you and I am SO sorry that the reason you've been silent is because of a late distant recurrence. Never ever forget you are surrounded by friends and by love.... We are all here for you, Jan.



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