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Thread: Live Blog at Working 2 Walk 2012!!

  1. #21
    Quote Originally Posted by paolocipolla View Post
    What do you mean exactly? That they will shift to other fields like MS or ALS?
    Well some probably would, but if you can make money avilable restricted to chronic some would take the challenge..
    If they don't take the challenge means they are loosers (so they wouldn't cure anyone anyway ) and we will know who they are after that...

    Well actually my favorite idea is always an X-Prize so that they will "spontaneously" work on what the prize is for...

    If you have any idea I am happy to listen as I am running out of shots lately, sure we have to do something to get many more researchers to work on chronic... especially if they get money raised by us.

    Paolo
    Here's an inspiring article and video about a group that is putting up a X-PRIZE(2 million dollars) for anyone that finds a cure for blindness. X-Prize is what we need to speed up finding a therapy that restores significant return to those of us with "CHRONIC SCI".

    Art Garfunkel offers 2 Million Prize to End Blindness

    When most people think of Art Garfunkel, they not only think of him as half the folk-pop duo Simon & Garfunkel; they think of him as the singer of “Bridge Over Troubled Water,” which includes the lyrics “I’ll take your part/ when darkness comes/ and pain is all around.” Appropriately enough, you can now also think of Garfunkel as a major player in the fight against blindness.

    Two weeks ago, the principals in a campaign known as End Blindness by 20/20 announced that they were putting up $2 million in gold for the individual, group, or institution that contributes most to eradicating blindness by the year 2020. Those principals are former Columbia University roommates Sanford Greenberg, Jerry Speyer and, yes, Art Garfunkel.

    The reward, known as the Sanford and Susan Greenberg Prize, will be administered by FFB’s longtime partner the Wilmer Eye Institute at Johns Hopkins University, in particular a governing council which includes Dr. Morton Goldberg, a world-renowned retinal disease researcher who’s also chairman of the Foundation’s Clinical Research Institute and a member of its Scientific Advisory Board. So how, exactly, does Art Garfunkel fit in?
    The singer explains his role in this video:

    Long story short, Garfunkel befriended Greenberg when they were roommates at Columbia in the early 1960s. At age 19, Greenberg suddenly lost his vision to glaucoma and, despite being told he should go home to Buffalo and learn how to make screwdrivers, graduated Phi Beta Kappa. He then attained advanced degrees, worked for U.S. presidents and found success as a tech entrepreneur – all while he, Garfunkel and Speyer, a real estate mogul, remained close friends.

    In 2005, during his commencement speech at Hopkins, the university’s then president, William Brody, told the story of how Garfunkel helped Greenberg in college by, among other things, reading his textbooks aloud to him. Years later, when a then-unknown act named Simon & Garfunkel needed money to record a demo of a song titled “The Sound of Silence,” Greenberg gave Garfunkel $500.

    Greenberg, Garfunkel and Speyer came of age about the time President John Kennedy challenged the scientific community’s best minds to put a man on the moon within a decade. It took roughly 8 years, or 2,978 days. And, in that same spirit, Greenberg et al. announced their challenge on October 18 – 2,978 days from when the winner of the prize will be announced, in mid-December of 2020.

    In another video on the site, Dr. Peter McDonnell, director of the Wilmer Eye Institute, explains that the $2 million prize is being offered to parties worldwide, so that not just any one agency or person, but an entire community of researchers, is working toward the same goal – “to find light for the millions who now awaken to darkness.”

    While FFB is focused specifically on retinal diseases, which affect 10 million Americans, its approach runs parallel to that of the End Blindness by 20/20 campaign. FFB has cast an international net so as to find promising research opportunities and raise the funds needed to ferry potential treatments through clinical trials. Seeing as Messrs. Greenberg, Garfunkel and Speyer are doing the same, we applaud their efforts.

    Art Garfunkel perhaps sums it up best in his video when he says that, although Greenberg has been able to achieve much in his life, he’s never given up on the vow, made at a young age, to end blindness for everyone after him. Then, with his arm around Greenberg, Garfunkel says that he once “tried to close my eyes for a day, in an effort to truly empathize with my dear friend here. I got up to an hour.”


    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  2. #22
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    Just got home from 2 days at W2W, my first time attending...It was awesome, great speakers, an over the top informative event, the staff did an incredible job, met lot's of CC friends and some FB friends (very international crowd)....Headed to Reeve-Irvine Research Center in the morning for the last part of the conference.

  3. #23
    Anyone care to summarize why we chronics should give a damn about this gathering? Wise Young is still our only hope, right?

  4. #24

    Angry

    Quote Originally Posted by rjg View Post
    Anyone care to summarize why we chronics should give a damn about this gathering? Wise Young is still our only hope, right?
    Exactly! It seems to have been a great pep rally. Those who put the meeting together will pat themselves on the back and say it was a success, as they should. Kudos to the organizers but in the end more should be expected from these meetings than just a 48 hour feel good buzz. I didnt read about anything new to get excited about just more of the same status quo:

    More funding needed, DUH!
    More research on CHASE needed.
    More research on PTEN needed.
    Research on Chronic SCI is still competing with Acute SCI.
    No announcement on ANY new clinical trials from any of the attending researchers! Dr Young is still the only game in town for "chronics".

    Man, enough with these Doctors that get into Chronic SCI research only to eventually move over to work with Acutes.
    "I'm manic as hell-
    But I'm goin' strong-
    Left my meds on the sink again-
    My head will be racing by lunchtime"

    <----Scott Weiland---->

  5. #25
    I don't see it this way. What I see is people understanding better what they need to do. Would I want them to be in human chronic trials? You bet your ass I do, but I still feel things are moving forward.

    Thank God we have Dr Wise, else I do feel desperation would get the best of me.

    I still continue with my 2,5,12 years plan.

  6. #26
    Quote Originally Posted by rjg View Post
    Anyone care to summarize why we chronics should give a damn about this gathering? Wise Young is still our only hope, right?
    My thoughts exactly...But the dissonance is troubling. You have all these researchers doing amazing work but only giving the perfunctory "we hope to take it to human trials in the future". At the same time, Dr. Young's networks are moving onto phase 3, and additional phase 2, trials with therapies that, to this layman, don't seem particularly more promising (note I am NOT saying they aren't promising) in the animal models. Anyone care to take a stab at explaining that?

  7. #27
    Quote Originally Posted by rjg View Post
    Anyone care to summarize why we chronics should give a damn about this gathering? Wise Young is still our only hope, right?

    Because even though they are focusing on acute SCI, the speakers are working on spinal cord regeneration (highly meaningful to chronic sci) instead of spinal cord protection (which is meaningless to chronic sci).

  8. #28
    Senior Member Schmeky's Avatar
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    It's the same ole' dog & pony show.

    1) "In the future"
    2) Not if, but when
    3) Acute now, but chronics will benefit

    The more things change, the more they remain the same. After 11 years, I wish I felt different, but I have not seen anything that would change my perception.

  9. #29
    Thanks a bunch for your blog, Kate.

    However, from what I read, the pace of research is still hampered
    greatly by lack of funds. I'm just happy that so many researchers
    manage to stay motivated despite all the obstacles.

    I'm particularly encouraged by Jerry Silver's work. Hopefully he doesn't
    end up like Davies and disappear into obscurity after generating a lot
    of hype.

  10. #30
    Senior Member lynnifer's Avatar
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    Or Dr Kerr ... dropping like flies they are!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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