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    #16
    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.

    Comment


      #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?

      Comment


        #18
        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
        sherman brayton

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          #19
          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
          sherman brayton

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            #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.

            Comment


              #21
              Just my opinion,
              I think they fast track what they themselves fear the most. Smallpox, Polio, HIV...
              It actually occurs to them that it could happen to them or their loved ones.
              The FDA ought to realize that SCI does kill. It may be a slower death, but many people end up committing suicide that can't handle it, or they die of the complications of it like Christopher Reeve did. I don't understand the slow pace of research either.

              Comment


                #22
                SCI is fatal...you all heard the guy from Cleveland who was on CNN with Dr. Young when Chris Reeve died, he said the average lifespan with someone with SCI is 8 years. That's a worse prognosis than being hiv positive. While we're on that topic, does anyone believe that Chris Reeve's exercise routine became detrimental to his body? Contributing to open wounds not given proper time to heal, leading to Sepsis, then death.
                Similar to drug cocktails therapy, it i more effective to treat early as possible, like SCI. The snail's pace of research has single handedly excluded all of us from ever getting better, making our SCI more chronic and beyond repair day by day. I feel like suing to get my thousands of dollars back, I've been ripped off, taken for a ride, help paid for someone's stupid career. THE MAJORITY OF US, WHETHER WE LIKE IT OR NOT HAVE BEEN EXPIRED FOR ANY THERAPY YEARS FROM NOW! I am writing here in the CURE forum because I want an answer to where my money went, when scientists continually whine about lack of funds. I've given and given for 5 years straight, only haven to been lead down a cruel road of false hope and hype. I have lost all respect for every scientist, excluding some of the guys in South Korea and China, who have been far more pioneering and caring with not a fraction of the funds American researchers have gotten. It's nothing but, " our hands are tied by lack of organized funding and limits to research testing". If you really care as much as you say, then leave this country and go work in a more hospitable environment, leaving your ego at the door.

                sherman brayton
                sherman brayton

                Comment


                  #23
                  If you would lobby, write letters, get on the news with the same "we're all going to hell and there is nothing to be done about it" mantra, you would be a valuable tool instead of just a tool.

                  Stop preaching hellfire and dispair to the choir, find some legislators to harass and
                  go to town.

                  J.
                  And the truth shall set you free.

                  Comment


                    #24
                    8 years of SCIlifetime??? [img]/forum/images/smilies/eek.gif[/img] [img]/forum/images/smilies/eek.gif[/img] in your world maybe, in my country quads live as long as rest of people, i know high-quads 50, 40, 30 years injured.

                    excuse my english.
                    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

                    -Hoc non pereo habebo fortior me

                    Comment


                      #25
                      NODEFAC-

                      Please grow up! What in the hell do you think I've been doing for 5 years! I've even lobbied directly with Bush's brother face to face! I've tagged down Senator Clinton on the street in Chappaqua, NY, I've pleaded with previous Florida Congressman Poter Goss over lunch before he became CIA chief in Sanibel, Fl. To imply my bitching and raving is not supported from bitter experience is absurd! To call me a tool is shooting yourself in the foot, you're too dumb to figure it out! I've stated our cause to individuals you'd most likely never get in contact with, ever!

                      sherman brayton
                      sherman brayton

                      Comment


                        #26
                        Originally posted by NoDafPlz:

                        If you would lobby, write letters, get on the news with the same "we're all going to hell and there is nothing to be done about it" mantra, you would be a valuable tool instead of just a tool.

                        Stop preaching hellfire and dispair to the choir, find some legislators to harass and
                        go to town.

                        J.
                        NODEFAC-

                        You'd have to be pretty dumb not to see what Brayton has accomplished during the last 5 five years. But remember this, having an opinion just makes you the monkey's uncle. If you pop off, especially with a statement as ridiculous as " Stop preaching hellfire and dispair to the choir," you should expect a torrent of hellfire equal to the stupidity of such a statement. If I were to say something as equally idiotic, I would expect nothing less from everyone on CareCure. Perhaps now you are beginning to see. It's not just a matter that such stupidity is an opinion, or a fact; it's just WRONG.

                        Ape shit on waffles to you, too, NocafPlz. Where'd you grow up, in a barn?

                        Comment


                          #27
                          Ouch, NY Guido, pretty harsh.
                          Please submit your photo and story of hope:

                          http://bridges2hope.unite2fightparalysis.org/


                          http://unite2fightparalysis.org/

                          Comment


                            #28
                            I WAS UNDER THE IMPRESSION THAT A PERSON WITH SCI HAS ALMOST A NORMAL LIFESPAN AS A NON SCI PERSON DOES, IS THIS TRUE, OR WAS THIS JUST ANOTHER LIE TOLD TO ME??

                            Comment


                              #29
                              Originally posted by davidh:

                              I WAS UNDER THE IMPRESSION THAT A PERSON WITH SCI HAS ALMOST A NORMAL LIFESPAN AS A NON SCI PERSON DOES, IS THIS TRUE, OR WAS THIS JUST ANOTHER LIE TOLD TO ME??
                              I too have known people with SCI that are 20,even 30 yrs post.

                              "everyday above ground is a good day"
                              "everyday above ground is a good day"

                              Comment


                                #30
                                I know it's hard to imagine what it would be like to be dependant on a machine to breathe. There's alot that can go wrong. If the ventilator fails, someone has to bag you until another is brought in. Or maybe just a hose pulls loose...What if you couldn't afford round the clock care? Or had to be in a nursing home? I don't know, but it wouldn't surprise me if the doctor were talking about vent dependant quads when he gave the life span average.

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