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    #31
    Originally posted by LetsGo View Post

    Fifth, can you see just in this thread how one person's misunderstanding of what was said can create a cascade of false information that other people buy into and jump on the bandwagon. People need to be responsible and get their facts first before making inaccurate statements.
    I agree, then I suggest you may want to reconsider and correct you post.

    Paolo
    In God we trust; all others bring data. - Edwards Deming

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      #32
      Originally posted by LetsGo View Post

      Sixth, I thought Dr. Silver you would be a little more professional. You know they are conducting chronic research so to stoke the flames of anger to "occupy" another organization or make people think you agree that they are not conducting chronic research is disheartening.
      I want to thank Dr. Silver for having the courage to come here on CC and at W2W to say what he really thinks, even when it will cause him to have more enemies.
      I believe some hard confrontation can be very useful to move things forward in SCI research from where we are today.

      I want also to thank the other researchers who have done the same.

      Paolo
      In God we trust; all others bring data. - Edwards Deming

      Comment


        #33
        Originally posted by LetsGo View Post

        Seventh, Ineedmyelin, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit.
        For sure they are missing something so perhaps some hard words may cause positive changes..

        About Rick in particular you should know RH orgs process many millions every years but no-thing goes to regenerative research at the moment. Still they word "cure" is used to attract donations.

        Is that ok for you?

        Paolo
        In God we trust; all others bring data. - Edwards Deming

        Comment


          #34
          Originally posted by LetsGo View Post

          Maybe, instead of attacking the organization that are successful in raising money, it would be better to push all the other research organizations to hire more staff who specialize in fundraising so they can increase the rate at which they conduct their research. There is enough money in this world for everyone. How The Miami Project raises money should be a case study for every other organization. They are great at it and they've moved this field forward faster than one other organization in the world. They have trained more scientists who work for other educational institutions than any other organization in the world. They publish more papers than any other organization in the world. They have helped lay out the foundation for the biology of the body so that new scientists can enter this field and not have to start the beginning. It is how science progresses for all diseases.
          Do you think the Miami Project is the best SCI research org we have?

          Paolo
          In God we trust; all others bring data. - Edwards Deming

          Comment


            #35
            Originally posted by paolocipolla View Post
            Please tell me more about all this exciting research that dr. Perse is doing, I can't wait to hear more!

            and once again, please explain me why firs acute and then chronic?

            I don't get it. Let's do first chronic then we move on acute SCI.

            Paolo
            They need to be doing both concurrently. Acute and chronic sci are basically two different injuries that will require two different methods of treatment.

            Researchers cannot focus on chronic first then acutes because no treatment for chronic sci will ever be even close to as good as a treatment for acute sci. Not to mention, it might take 50 years before they fix chronic sci, if ever. It looks like an acute treatment may be here in the next decade or so. Sparing nerve connections seems to be infinitely easier than regenerating nerves in cns. Why would you purposely welcome a new patient into the hell that is chronic sci, when it could have been prevented with an acute treatment?

            On the other hand, the current situation of focusing on acute sci only is wrong too; especially the deception that goes on where chronic sci are duped into believing they are next to be focused on in research labs. I don't see why anyone with a chronic injury would ever donate to labs that are not currently focusing on chronic sci.

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              #36
              Originally posted by LetsGo View Post

              I haven't been on these board in many years and seeing these postings reminds me why I don't come here. The negativity, anger, attacks are so disgraceful. I hope no scientists read these blogs b/c to infer that they are in this field to "perpetuate" a career is sickening. If they actually read some of these comments in general they would probablly leave the field and research another disease where the people actually support them. Instead of such vicious attacks this group should be encouraging other groups to replicate success of other organizations in order to keep the field moving forward.
              If they are doing so good as you say they have a big problem of communication at the Miami Project.

              Then about researchers, if thay can't face criticism i.e. explain they are doing the best possible thing to find a cure ASAP it is OK for me if thay move to another field.
              This is tough job for tough & smart people, possibly also heart driven.

              Many SCI researchers I met do not qualfy for the job IMO. Unfortunatly I am not in a position to hire & fire researchers.

              Paolo
              In God we trust; all others bring data. - Edwards Deming

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                #37
                LetsGo, lets talk about all that.

                You can find me on skype or on FB or just PM me.

                Paolo
                In God we trust; all others bring data. - Edwards Deming

                Comment


                  #38
                  Originally posted by LetsGo View Post
                  I undestand your frustration. But everyone needs to stop focusing on how long it is going to take. The truth is no one knows. It might be next year or it could be 10 years. Isn't it better to look at how can we move the field foward the fastest? I'm HIV+, so while its not the same as being paralyzed by any means, I can understand the frustrations that go with a time frame.
                  The truth is that if we don't start putting chronic SCI first a cure for us will never happen for chronic SCI, but they want as to donate, do foundraising, lobby etc..
                  Sorry I have been screwd long enough!

                  Paolo
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    #39
                    Originally posted by Jim View Post
                    Thank you for this LetsGo.
                    Could you be more clear Jim?

                    Paolo
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                      #40
                      Originally posted by Christopher Paddon View Post
                      I mean that W2W's purpose should be to make itself redundant as soon as possible by finding a cure

                      It should not perpetuate itself into a neverending series of rallies that exists for its own sake (which many of us think some charities do)
                      Chris,

                      I can tell you that for me one of the main goal of W2W was to come back home with a lot of things to do to make a cure happen. W2W is a learning experience that helps you understanding what you can do once you go back hope.
                      Still it remains hard to figure out what the best thing to do is, but for sure the more we learn the more chances we have to help in the right direction and also to stop working in the wrong direction.

                      I am afraid LetsGo has something to say here.. LOL!

                      Paolo
                      In God we trust; all others bring data. - Edwards Deming

                      Comment


                        #41
                        Originally posted by NowhereMan View Post
                        They need to be doing both concurrently. Acute and chronic sci are basically two different injuries that will require two different methods of treatment.

                        Researchers cannot focus on chronic first then acutes because no treatment for chronic sci will ever be even close to as good as a treatment for acute sci. Not to mention, it might take 50 years before they fix chronic sci, if ever. It looks like an acute treatment may be here in the next decade or so. Sparing nerve connections seems to be infinitely easier than regenerating nerves in cns. Why would you purposely welcome a new patient into the hell that is chronic sci, when it could have been prevented with an acute treatment?

                        On the other hand, the current situation of focusing on acute sci only is wrong too; especially the deception that goes on where chronic sci are duped into believing they are next to be focused on in research labs. I don't see why anyone with a chronic injury would ever donate to labs that are not currently focusing on chronic sci.

                        Sure I want acute SCI to be cured ASAP if possible
                        I also don't think that a cure for chronic is that far if SCI research start to focus on chronic SCI seriously.
                        Then consider also how long it takes to run a trial for acute SCI, think about Cethrin or just look at Geron how long is it going to take to do 10 patient with acute SCI?
                        If you want to do a trial for chronic SCI we are all here waiting to apply....
                        So, maybe, the fastest way to find a cure for all is to start with chronics as, if you find a way to regenerate axons in chronics, likely it will work in acute too.
                        BTW I am not even sure we need a net of centers to do a trial on chronics. Probably one big center can do a trial in a more efficent way than a network of centers.
                        Probably Wise desagree here.

                        Paolo
                        In God we trust; all others bring data. - Edwards Deming

                        Comment


                          #42
                          I like a network of centers... Cast a wider net
                          "That's not smog! It's SMUG!! " - randy marsh, southpark

                          "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


                          2010 SCINet Clinical Trial Support Squad Member
                          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

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                            #43
                            Originally posted by Christopher Paddon View Post
                            I mean that W2W's purpose should be to make itself redundant as soon as possible by finding a cure

                            It should not perpetuate itself into a neverending series of rallies that exists for its own sake (which many of us think some charities do)
                            This is a major point. The BBC in UK is currently promoting "Children in Need". Shaftesbury, Dr. Barnardo and National Childrens' Homes have been around for generations. Why in the 21st century do we still have children in need in a so-called civilized, technically advanced country?

                            It appears that all the fun days, big red noses and celebrity knees ups really are a self perpetuating machine. If you really believe in something write out the bloody cheque and post it! If folks want a jolly good beano then let them get on with it.

                            Rallies are fine, if you can get to them. As has been expressed by more than one forum member, many of us would to feel really empowered to be consulted by our medical contacts to get involved with real therapies. In Britain we hear claptrap about scientific rigour, when the correct term for the attitude to sci is rigor mortis. So many doctors seem gob smacked that anyone should be interested in finding a cure.
                            2010 SCINet Clinical Trial Support Squad Member
                            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.

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                              #44
                              LetsGo,

                              if you have time, it would be very kind of you to answer some of my questions.

                              If you prove me wrong it's fine for me.

                              Paolo
                              In God we trust; all others bring data. - Edwards Deming

                              Comment


                                #45
                                Originally posted by lunasicc42 View Post
                                I like a network of centers... Cast a wider net
                                Well, we have NACTN...CDRF has spent 7.9 million on all of the various centers so they would ready for clinical trials? They tested Riluzole a few years ago for 36 acutes. The 7.9 million dollar net didn't accomplish much. I believe the orginal budget was for 12 million, so they still need to spend 4.1 million more on that.??? I think they're still gathering names in a registry. The net hasn't really done anything to cure SCI...there's no chronic clinical trials in their wide net. But the money sure flows just fine.
                                Last edited by GRAMMY; 19 Nov 2011, 11:48 PM.
                                http://spinalcordresearchandadvocacy.wordpress.com/

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