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Thread: 2004 vs 2005

  1. #11
    I would hate to think that some countries
    are waiting to see what comes out of China and Portugal instead of blazing their own trail.

    Do you think seven years for China to have
    a solid, verified combo for chronics yielding 5-8 motor levels of return is more realistic? Maybe the USA in 15?

    J.

  2. #12
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    If trials come to fruition by 2006, where does this leave us? Another decade or two until we get a chance at a better life? We've hit the 5 year mark since 2000, and if you ask any scientist who believes in this research, he or she will say in 2005, " hopefully in 5 years". Now I am beginning to see and feel what it is like to be a long term SCI survivor, and I all too clearly see the snail's pace of research, and am beginning to think that if it ever comes, a cure will not be applicable to me. That's tragic after all the promise I was filled with in 2000, and in this country under it's strict guidelines, no treatment will be brought to the masses until it is disected and agreed upon by a medical board, which, in the end, is just too fuckin' far down the road! I am going to spend my thirties and forties in a wheelchair unless I get the balls to check out. Treating chronic Lumbosacral SCI isn't even on any radar on this planet, and frankly, treatments ( as they should be ), will be aimed to fixing Cervical injuries. These 5 years have been a BIG letdown, making most of us more chronic by the minute. Not to undermine your daily struggles, Letsgo, but I'd take a positive HIV diagnosis over my current condition any day. For those fortunate enough who can afford retroviral cocktails, AIDS research has permitted a gargantuan leap in quality of life. It took a total of 15 years, from first strains of HIV in 1981, to 1996, when drug cocktails became available. Where were the exhaustive years of clinical trials for these drugs? Has SCI been soo hopeless of a field that there are still researchers and doctors who feel a cure is infintely impossible, let alone retrieval of bowel, bladder, and sexuality?

    sherman brayton

  3. #13
    The reason for my post was not to change Schmeky original discuss but to add something to it. My point is when everyone is placing all their hopes if 2004 was the year or 2005 or 2006, doesn't end up making you feel helpless? Instead of placing your hopes on one year to the next, why not make sure you are doing everything possible to pressure the scientists, continue to organize and demand that Washington politicians hear and see you, raising the money to care and cure research and raising the public's awareness of this issue.

    It's mindboggling to me to look at the big picture and see how far you have come in 20-25 years of serious research. Cancer can't say they accomplished as much in that short of time or diabetes or parkinsons etc.

    The gay community raised the money initially for AIDs research, the marched on Washington, protested the state capitals and forced the media to pay attention. The SCI community needs to do the same.

  4. #14
    Senior Member Schmeky's Avatar
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    Seneca,

    I'm concerned that we may be discussing the same situation in 2010. We all hope not.

    Obed,

    I respectfully disagree. The science is close for acutes, practically there, but for chronics, there is still fundamental disagreement on the Glial scar as a regeneration barrier. No one has demonstrated an effective chronic therapy to date.

    LetsGo,

    You're right on advocating and pushing the political system. The SCI community is not as united as it could be, I have tried on a local/regional level to spark advocacy with virtually no success.

    AIDS funding was given a huge boost by hollywood moguls whose colleages were stricken with the diesease. Elizabeth Taylor virtually demanded one of our former presidents acknowledge the AIDS epidemic and divert funds to research. In addition, she raised hundreds of millions through advocacy for many years.

    Reeve is gone, we no longer have a visible champion. America forgets quickly.

  5. #15
    Schmeky,

    Check Steven Strittmater's work as well as Marie Filbin's, Lisa Mckeracher(sp), Os Steward, Mark Tuczinsky(sp) and a few others like Mary Bunge, Barth Green.

    Granted that sci cure is "easier" in acutes however that does not mean that the research is less promising. Axon regeneration/targeting, neuron replacement is what it is regardless of time injured (chronic/acute). The challenge is to consistently experiment with science that is available. That's not happening, again, regardless of time injured.

    If you want to break it down to clinical trials/experiments acutes and chronics then essentially I see:

    1. Macrophage (Proneuron) - true acutes
    2. Beijing - chronics (including ALS)
    3. Portugal - chronics
    4. Russia - chronics

    Any injury beyond 6-8 weeks is considered chronic.

    Believe me I'm not trying to convince you. I can only suggest that you attend a cutting edge neuroscience meeting, watch, read, and listen to the presentations and I'll bet you come away increasingly frustrated. Not because of the lack of effort and progress - which is astonishing - but the lack of urgency and ultimate clinical application (talk about frustration).

    The abyss between bench and bedside is huge. This is the gap that must be bridged (especially in the U.S.) in order for us to achieve recovery. Political persuasion and adequate funding would shorten the gap and ultimately the time frame. This is where our efforts - day to day - should be focused (none here are researchers so why try and pretend that we are instead of working to support those actually in the lab?). Understanding the science is all well and good but what does it matter if you're not experimenting with it? I liken it to having a really nice technically efficient car in your garage but no gas (nor enough money to buy any) to drive it. There it sits like so much of the current sci research/science.

    The lack of consistent sci related clinical trials - given the science available - is unconsionable.

    Technically, on this site, the legislative and funding forum should be the biggest and most popular. Why? The reason is simple - its where each one of us can make the greatest impact to help each other/community.

    [This message was edited by Obed on 12-31-04 at 10:46 PM.]

  6. #16
    Senior Member Schmeky's Avatar
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    Obed,

    You missed a couple:

    Summary of cutting edge human trials:

    1) Portugal, Lima, nasal mucosa
    2) Australia, Autologous OEG
    3) China, Huang, fetal OEG
    4) Brazil, Tarcisio Barros, Autologous Bone Marrow Stem Cells
    5) Russia, Bruhovetsky, bone marrow stem cells & OEG
    6) Korea, Umbilical cord blood stem cells

    1 through 6 have begun.

    7) Mexico, Rameriz, cord blood stem cells, 2005
    8) China, stem cells, possibly 2005
    9) South America, stem cells, McDonald/Geron/USA, 2005-2006
    10) United Kingdom, Geoff Raisman, OEG, 2008
    11) Spain, Almueda Ramon-Cuento, OEG, late 2005, early 2006
    12) USA, Tulane Med. Ctr., Autologous Bone Marrow Stem Cells, Mid-2005
    13) Germany, Neuraxo Biotec, Condaneurin, 2005-2006
    14) The Ambler Group, undetermined combinations, USA, 2005
    15) Spinal Cord Society, undetermined combinations, USA/New Zealand, 2005
    16) China HKU/SCI Clinical trials, undetermined combinations, 2006

    7 through 16 are scheduled/pending.

    Some are for chronics, some are not. Your overall comments are very accurate. I would never argue with someone that has attended a NeuroScience convention, I have never attended yet.

  7. #17
    Originally posted by Obed:


    The abyss between bench and bedside is huge. This is the gap that must be bridged (especially in the U.S.) in order for us to achieve recovery.
    Obed,
    This is what I don't understand. I mean, if you are a researcher/doctor who really cares, wouldn't you get a possible treatment to people as quickly as possible? Even if it meant going to another country to get it done? Wouldn't you do whatever it takes?
    I don't understand why for instance Keirstead had such great results with rats, and yet it takes so long to publish that paper (heard it was due out this last August/September but was delayed), what takes so long to write a report?... And then they aren't even going to start human trials in 2005 they will wait and start them in 2006? What am I missing? Have I misread or misunderstood something? Does Geron not have the money to start the human trials now? Yet it doesn't appear they are fundraising? What will be different a year from now?

  8. #18
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    Could someone answer why retroviral drug cocktails for HIV patients became available, cutting every clinical trial corner, so swift and fast, and SCI must go through years and years to get a clinical trial off the fucking ground? Drug cocktails seemed to come out of nowhere in 1996, and were immdediately available to those who could afford it. Is SCI not considered as much of a life threat as to HIV postive patients? That's a load of horseshit, and it appears to represent the lucrative avenue drug companies have to a larger population of afflicted folks. SCI seems to never have enough funding, money, or interest to general scientists. I feel as if all the money I contributed to was a giant waste, contributed to researchers who are not in any rush whatsoever, and towards a sliver of clinical trials to treat acutes. I want my money back, enough excuses and doubletalk, I am tired of supporting groups of bitching, whiny scientists who are confined to a lab room full of rats.

    sherman brayton

  9. #19
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    Some of these researchers are primadonnas, jousting to get their name in the media so they can receive more money for THEIR self interest for a lifetime of research opportunities in the lab and academia only.

    sherman brayton

  10. #20
    Brayton, treatments for cancer and HIV are on the FDA's fast track approval list because they're considered imminently fatal without rapid intervention. SCI isn't.

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