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Thread: Live from Working 2 Walk 2010!

  1. #91
    Kate, thanks for reminding us of all that goes into this event. I have sent an email throught the U2FP site offering to help. I actually do just this for a living, I am in development for a homeless services non-profit so I recruit volunteers, plan events and request donations. Bring it on!

  2. #92

    Expect and Scrutinize

    Quote Originally Posted by kate View Post
    Friday morning


    Donna Sullivan: i think I was just promoted from bulldog to worker bee!

    Introduces Mark Smith, who's doing the keynote speech this morning. He was born with severe cerebral palsy and was not supposed to be able to do a thing ever. Ever.

    He's wheelchairjunkie.com guy . . . check him out there.



    He's talking about how people who suffer from paralysis from all diffferent causes so rarely get together.


    How was it in 1952 that polio, with only 58,000 cases, was such a national priority? Go back to 1932 and look at FDR. He went on the radio and asked that every single person in the country donate a dime. 2.7 million letters with dimes arrived within a week.

    The president made polio a national priority. In 1956 we had a vaccine. by 1960 the polio virus was gone in the USA. An astounding feat --

    And yet as we sit here this morning there are a hundred times more people with paralysis than had polio in 1952 . . . why is it not a priority?

    Revolutions don't occur based on justice. Revolutions occur based on hope.

    I'm sitting here looking at people with hope.

    We're not looking a cures for individual conditions; we're looking at cures for a human condition (called paralysis).

    Wow, great guy!
    I think this statement needs to be stronger: Revolutions occur based on expectations and accountability.

    "Hope" is such a passive verb.

    "Expect and hold accountable" are far more Action and Goal oriented.

    There is also a lot of money wasted in what I call "feel good," "going through the motions" research. Just to write more "peer reviewed and published" papers.

    An analogy would be research on mental illness "discovering and proving" that people who eat chocolate suffer less depressions.

    Improvement needs to be significant, not minor.

    The only company that I have seen to be steadfast so far on both, expectation and accountability, is Geron.

    Hopefully more research will be as goal oriented, and hold up to scrutiny as what we've seen from Geron.

    OTOH sometimes in research you have to work on hunches, in order to make the real discoveries. More on the hit and misses in research here:

    http://www.nytimes.com/2010/11/09/he...er=rss&emc=rss

    But "HOPE" is not going to weed out "waste"

  3. #93
    A huge THANK YOU to everyone involved - presenters, attendees, W2W support
    Kate - you are such a fantastic translator for CareCure and all who could not make it. Not to mention those who DID make it but had overloaded brains and need the refresher!

    It's always so great to see everyone, and be a part of the team!
    Lindsay

  4. #94
    Quote Originally Posted by kate View Post
    I caught that too, Schmeky . . . as did many others. When I asked him about it, Stephen told me last night that his paper is under peer review as we speak. I take that to mean it's out of his hands when the thing makes its debut in the world, and I know that he's constrained from giving details until it gets accepted.

    I felt odd yesterday, writing the same information we had from his lab last year . . .
    Kate and Schmeky,

    When the paper comes out you shall both be happy...I guarantee it!

  5. #95
    Pro-SCNT; I just read your post. My thoughts parrallel yours. I feel that expect is a word that translates into real progress. The feel good words and passing the buck to years away, is another way to create job security. We need results that are significant and not laboraytory talk that doesn't translate into visible and recognizlabe progress to the patient. I'm hoping that Geron's trial will translate into that for acutes and Wise's or anybodys trials for chronics.

    keeping on

  6. #96
    Quote Originally Posted by zoki83 View Post
    Kate and Schmeky,

    When the paper comes out you shall both be happy...I guarantee it!
    I hope.. I'm starting to get pretty curious ...
    "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

    Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  7. #97
    Senior Member
    Join Date
    Mar 2007
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    2,086
    Set up a login at U2FP. Let me know what I can do from here. Fall and Springs are really busy for us but with the long Minnesota winters, I need something to do!

  8. #98
    Quote Originally Posted by leschinsky View Post
    I cant possibly imagine who that might have been! I will blame the Norwegians for being the bad - read fun - influence Too bad the Irish trio went to another bar, it was nice meeting Martin tho, and the beloved Buck Nastier earlier in the day.

    The doctors were great I had interesting confabs with Wise, such a sweet soul, and Stephen Davies who wants me to keep in touch with him. U2fp put on such an impressive conference. I will definitely volunteer kate!
    Fixed.

  9. #99
    ZOK18 3
    you say when the paper comes out you shall both be happy i guarantee it


    can any one say when the paper will be out . if the paper is good what will his next move be . will it take him long to do it
    sorry i had to ask
    Last edited by skeaman; 11-15-2010 at 06:38 PM.
    AS I SIT HERE IN MY CHAIR . I LOOK OUT UPON THE GROUND .I WONDER WILL I EVER GET UP AND WALK A ROUND ??


    http://justadollarplease.org

  10. #100
    Quote Originally Posted by skeaman View Post
    ZOK18 3
    you say when the paper comes out you shall both be happy i guarantee it


    can any one say when the paper will be out .
    He told me it's been under peer review 8 months and the process is taking about 18 months now.

    Buck to reach beloved status you'll have to hang out longer!
    Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

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