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A fervent wish for the coming year

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    #76 are ruining this convo with your love of bickering.
    the subject is not me, its usa attitudes toward research. if they can't preform, get out the way. go slow down cloning babies research. the sci research community may have started out with good intention, but it is turning into a recliner chair field. no pressure from the paralyzed, "the establishment" still believe any breakthrough is 30 years away, and "the book" provides an guide to slow research.


      cjo, I am proud of Dr. Huang. Many of the people that I trained have run or are running clinical trials, or doing spinal cord injury research. That is what I do. Wise.


        Is it important that the human trials are done in the US? We want treatments that ultimately repair enough of the spinal cord damage to return function.
        Surely if this were done in China or Portugal, the US would make the treatment available to its citizens.



          i hate bickering . the main reason i asked you the question on what you are doing to try to correct your views of what is wrong with the parameters currently placed on research regarding clinical trials etc. was that i was trying to decide whether you were trying to fix what you perceive is wrong with the research process in the U.S.A. or simply mouthing off . unfortunately from my experience , the people who make the most noise about problems do the least to fix them . i find it strange that you get stuck into the researchers [ and i do realise quite often egos play a part in this field ] when surely bureaucracy plays a big part in slowing down the research being bought to the publics use . for example , operating within existing legislation which is quite often enacted by politicians who do not understand the science involved , the FDA insists on clinical trials etc. before registering a drug/ allowing a proceedure to be used , drug companies do their figures on projected returns before deciding how much money to grant for R&D , doctors/surgeons will not proceed with a proceedure before it has been widely peer reviewed and of course there is always the litigation fear [ remembering that the U.S.A. is the most litigious country in the world ]. these are administrative bottle necks which i am sure most researchers wish they did not have to deal with . surely it is at this administrative level is where the pressure should be bought to bear to try and speed up research . this is not a problem that solely affects U.S. citizens , many of us from other countries watch with great interest research projects in the U.S. and in the case of the OEG trial in Brisbane they are not going to release their findings for 3 years . i personally know 3 researchers tied up with SCI + Dr. young and i am sure all of them would consider it one of the most satisfying days of their life when it can be said '' suffering from SCI is in the past'' . compare that to ringing a bureaucrat with a problem - first you get to listen to ''greensleeves '' for at least 30 mins. - you get someone who asks a lot on inconsequential questions like ''what size underwear do you have on , and , how many bowel movements in the last week '' , only to have them tell you this is not their area of expertise -- you then get passed on through a few dozen more people asking similar questions , - only to find that the only person who can help you is on a motivation/leadership/customer relations -or playing golf ! the administrative level is the one most in need of a change of attitude and red tape restrictions .

          every day i wake up is a good one .

          [This message was edited by dogger on Jan 08, 2003 at 12:45 AM.]

          [This message was edited by dogger on Jan 08, 2003 at 12:47 AM.]
          Every day I wake up is a good one .


            Wise you should be proud !!!

            The more researchers that you train and
            possibly absorb your enthuisiam increses our
            chances. Dr. Albert Goodgold who I have known
            for over 25 years is very proud of YOU!!!!

            I did a search of the NIH and found that there were
            863 grants involving sci from cell research to ambulatory
            training and I wish that someone in our government could
            tie them altogether in the big picture instead of all
            these little fuedal states of research.There is a lot
            of money. The 4 ap trials recently received over $800,000.
            and I know NY state and city have millions in grants
            at MT. Sinai and NYU.

            Howevere the future looks so much more promising than it
            did 2 years ago.

            Thanks for all your efforts and for your unwavering support !!!



              dogger your bunch of noise and not saying nothing. if roles were reversed and usa doing oeg and australians researchers sitting around reading comic books, you'd be asking questions too. so drop it, i will not sit quiet.


                DA - I believe we need people like you to make a noise. The fact remains however that the noise would be more useful if it was made outside of these forums as well. Made loud enough for people with money, people who authorise trials (and eventually treatments), people who are not aware of the progress being made in laboratories around the world, influential people who as yet are unaware of the fact that spinal research could soon turn dreams into realities if their bearocratic influence was applied and other peope to hear it.
                I believe this is what Dogger is asking if you are doing (Dogger, please excuse me if I am wrong). It is encumbent on us all to write to people we perceive as being able to speed up the beaurocracy that makes this journey a long and slow one. We must not throw the book away because then we will have to write another one and that will take a long, long, long time. We must deluge the people who wrote the book with letters encouraging them to turn the pages more quickly. If we all do this, cetainly within our own countries where our status as tax payers gives us a louder voice but also outside our own borders then our voices become harder to ignore and instead of putting posts on this forum that criticise the very people who give us realistic hope of receiving effective treatments, we may be able to read posts with news of more trials and trials being promoted to treatments.
                We can and should ask what is causing the delays. It is important that we ask people who never look at this forum and it is important that we inform ourselves before we ask so that we can apply intelligent pressure to the people who hold the book and regard its word as gospel.
                The peope who read these postings are already in agreement that things are moving too slowly. We may speed things up more effectively by directing our frustration to the authorities that are the brake, rather than making unwarranted criticisms of people who are busting their guts trying to find ways of treating SCI.



                  I have finally found inner peace and harmony. I have acknowledged the fact that my paraplegia is permanent. For each glimmer of positive news I hear, a barrage of negative reality follows. This year I quit bothering politicians, sending editorials, contacting international scientists, sending letters, and sending $ to Miami Project, Chris Reeve Foundation. Finally I realize what those injured for a long time have known all along, years go by but the time frame for a phase 1 trial stays the same, it was 5 years back in 1999, today it is 10 years!
                  For those newly injured reading this, I strongly advise you to not make the same mistake I have the last two years, desperate with each new day for a fix, visioning a day when we could wheel into a hospital and go under the knife for help. The sooner you accept this, the better grounded you will be! I cannot believe I am repeating what was said to me upon discharge. I refused it, and backed up my argument with all the science news 2 years ago. To this day, no human being has recovered significant function from these trials. It is almost easier to let go.... and keep your chin up and live to the best of your ability. Curative relief is not around the corner,the advances we may see in the near future are likely to be small. Total regeneration of the spinal cord, if possible, is decades away.


                    Bent......... As much as I hate to admit
                    this, I must agree with you. I am only coming
                    up on 2yrs of paraplegia and have had such
                    hope in a recovery. After reading your post
                    a sad reality did stare me in the eye. I
                    think i must too attempt to ground myself
                    and accept the truth, I am stuck like this.


                      The pendulum swing.

                      Understandably bent, RJ, and I'm sure others, that you feel the way you do. It's difficult to manage the extremes one day of hope and the next desperation or acceptance. We all deal with our situations individually. None right or wrong.

                      Often I've felt as you do. However, hopefully (or else I'd go stark raving mad) I've found a middle ground. One that offers me the frustration of today with the patience and hope of tomorrow. Because I don't know what tomorrow may bring or offer in terms of my recovery from paralysis?

                      I do know that progress is being made on our behalf and with a concerted effort at a pace unforseen and unexperienced ever in the history of mankind. One only has to read 10 or so articles posted to realize undeniably that progress towards a cure is happening. Is it fast enough? No. Aggressive enough? No, imo, but arguable (depending on one's personality some may think science is being overly aggressive). Funded enough? No. Improving? Yes . Closer today than yesterday?, Yes. Do we need to do more as a community, Yes!

                      When I weigh the "yes's" and "no's" in my mind, my heart and my soul I believe that there will be a cure within enough time for me to re-enjoy what was once lost. Will it be 100%, No, I don't think so. Will it be 10%? Again, No. Somewhere in the 75% range is where I'm shooting for. I believe as I have from the beginning that a cure for paralysis is a question of 'when' but not 'if'. And whatever small part I can play in speeding up the 'when' I will do.

                      I've only been a member of this sci club for 2.5 yrs but I've learned that we all face this challenge differently. Its ok to believe in a cure. Its ok to not believe in a cure. Its ok to be in the middle. Personally I believe in the cure. However, to each his own and whatever it takes to get one through the day. That's the important thing. Continuing with life.


                      Btw, Adrian, excellent post.

                      Fortitudine Vincimus
                      (Through endurance we conquer)


                      • #86
                        Bent and RJ

                        Why do you even bother checking the CURE forum with that pessimistic attitude? 5 years from now, I'll WALK up to each of you in your wheelchairs and smack you upside the head for being so ignorant and stupid. Maybe you can start a we're "screwed for life" forum somewhere else. I know you have every right to post here, but if you truly believe what you wrote, what are you doing here?


                          SCI Accountability

                          Very well stated Chris.

                          Speaking from my own experiences, it IS necessary to accept your spinal cord injury and move forward with living. This is not to say, however, that one should lose hope in future therapies/treatments or the proverbial "cure." In fact, it would be quite selfish and irresponsible for a member of the spinal cord injured community to discount the hope and/or perpetuation of an eventual cure. We did not ask for these injuries...just like cancer, MS, MD, CP, etc. did not ask for their "disease." Nevertheless, we now experience daily the effects of SCI and must hold ourselves accountable - to at least some degree - to finding a way to "fix" a damaged spinal cord. I hate "what if" hypotheticals, but take a second to imagine your son, daughter, loved one etc. incurring a traumatic spinal cord injury. You've had a SCI for 20 years and gave up hope for a cure years ago. I know I would have wished I tried to do more to support the cause...IN SOME WAY. Shouldn't we all take an active stance for those that are sustaining these injuries every day? The cure may be days, years, or decades any circumstance, spinal cord injuries will keep pouring in to our emergency rooms by the thousands. If we aren't part of the day of the magic pill, it's our responsibility to ensure that our descendants are.


                          NEW WEBSITE FOR ADAPTIVE SPORTS!!


                            Dr. Young, would it be all right to submit all or parts of your original post here to our local newspaper? Debbie and Bill are right about getting the facts out to the public. The mere mention of human cloning freaks people out. Also Dr. Young, did you graduate from the University of Iowa? Most of the people I have talked to have no problem with therapeutic cloning and think it is ridiculus to throw away fertilized embryos.



                              I wrote the above to our CareCure community and therefore it assumes familiarity with some of the issues. It will require rewriting, depending on the audience of the newspaper. If you think that there is an appropriate place for it, I can work on making it more understandable that particular audience. I received my Ph.D. from the University of Iowa where I attended from 1971-1974. Iowa remains close to my heart.




                                quote ''dogger your bunch of noise and not saying nothing. if roles were reversed and usa doing oeg and australians researchers sitting around reading comic books, you'd be asking questions too. so drop it, i will not sit quiet.'' unquote

                                ''not saying nothing'' , 2 negatives make a positive .
                                i'm not asking you to sit quietly , but am interested in whether you are doing anything outside this forum to correct what you see as a problem with SCI research ? also as i have posted i think the problems with bringing SCI research to patients is due to administrative red tape and an uncaring attitude at that level . it is quite possible i am wrong about this due to not fully understanding the U.S. system . i would appreciate you telling me why this is due to the researchers attitude please .
                                OEG's will not possibly help me for a long time , much longer than you could recieve benefits from it . i have been told this by a doctor who trained 2 of the doctors who are doing the trial , due to my type of injury .

                                Adrian , you expressed my views very clearly .. thank you .

                                dogger .

                                every day i wake up is a good one .
                                Every day I wake up is a good one .