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Why Don't We Have a Cure for Spinal Cord Injury? 2016

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    #61
    Originally posted by Patton57 View Post
    This is a great post.
    I agree!
    Dennis Tesolat
    www.StemCellsandAtomBombs.blogspot.com

    "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
    Martin Luther King

    Comment


      #62
      Originally posted by lunasicc42 View Post
      if I had a wish it would be that someone would incorporate UCB, detethering and epidural stim all together as a combination therapy... See how that works... Does anyone know if any researchers are interested in this route
      I feel really disappointed that is what you would use your wish for. Especially considering the amount of time you clearly spend following research initiatives.

      Comment


        #63
        Originally posted by paolocipolla View Post
        I like this post as people need to realize that to cure SCI turned out to be a much more complex problem than researchers use to think in the past.
        Fortunately, now there are research tools that were unthinkable 10 years ago and more will be available soon to crack down the complexity of the problem and solve it.

        No one can tell when a cure will be found, but in my opinion now it really looks more possible than ever and the SCI community should act to help making it happen sooner.
        Probably the SCI community needs a leader organization to drive proper actions.
        Unfortunately, in my opinion, such organization does not exist at the moment...

        Paolo
        An inspirational leader to take us to the promised land? One ring to rule them all? There can be only one? I've seen this show before. We just need a couple of dragons and an electrically stimulated SCI zombie army uprising and we'll be ready to wage war on paralysis.

        Serious questions:

        1) Who is accountable for delivering Cures?
        2) What is the SCI Community? What characteristics does it have and what value can be drawn from it?

        FPF

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          #64
          Originally posted by Fly_Pelican_Fly View Post
          I feel really disappointed that is what you would use your wish for. Especially considering the amount of time you clearly spend following research initiatives.

          Ok, noted. What potentially curative avenues would you like to see more aggressively pursued
          "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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            #65
            Am I missing something? From what I have read of the research (J silver, Invivo, E Stim etc) we are pretty fricken close to a cure. It's just a matter of assembling our wagons ( to borrow an analogy) in the right order and getting the treatments across the FDA valley of death. Please correct me if I am wrong.

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              #66
              1) Who is accountable for delivering Cures?

              Excellent question

              Comment


                #67
                Originally posted by Fly_Pelican_Fly View Post
                An inspirational leader to take us to the promised land? One ring to rule them all? There can be only one? I've seen this show before. We just need a couple of dragons and an electrically stimulated SCI zombie army uprising and we'll be ready to wage war on paralysis.

                Serious questions:

                1) Who is accountable for delivering Cures?
                2) What is the SCI Community? What characteristics does it have and what value can be drawn from it?

                FPF
                I am not sure I fully understand your points, but I am sure they are good ones, so, if you have time, please explain more in details your perspective about the current situation of SCI research and what is the most effective way to move forward in your opinion?
                I am certainly willing to help in all the ways I can!

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

                Comment


                  #68
                  Originally posted by lurch View Post
                  Am I missing something? From what I have read of the research (J silver, Invivo, E Stim etc) we are pretty fricken close to a cure. It's just a matter of assembling our wagons ( to borrow an analogy) in the right order and getting the treatments across the FDA valley of death. Please correct me if I am wrong.

                  I know what FPF was talking about... I DO tend to get a little more excited about the potential possibilities of certain therapies than ends up being warranted(I mean I didn't fall for the Shroff or X-Cells, but I do usually hold on to any shred of hope until it becomes proven without a doubt that a potential therapy isn't efficacious)
                  "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

                  Comment


                    #69
                    Originally posted by paolocipolla View Post
                    I am not sure I fully understand your points, but I am sure they are good ones, so, if you have time, please explain more in details your perspective about the current situation of SCI research and what is the most effective way to move forward in your opinion?
                    I am certainly willing to help in all the ways I can!

                    Paolo
                    Answer my questions first and maybe we will get closer to answering your question.

                    1) Who is accountable for delivering Cures?
                    2) What is the SCI Community? What characteristics does it have and what value can be drawn from it?

                    Comment


                      #70
                      Why Don't We Have a Cure for Spinal Cord Injury?

                      1. Slow Methodologies of Medical Science
                      2. Complexity of Nervous Systems
                      3. Low number of people with SCI
                      4. Lack of Monetary Incentives
                      5. Lack of cooperation between Labs
                      6. Lack of Social Awareness
                      7. Big Pharma

                      I wonder how fast thing would go if Mark Zuckerberg would get SCI. Or some other billionaire. I think the best bet is to inspire Bill Gates to help us out.

                      Comment


                        #71
                        Originally posted by Fly_Pelican_Fly View Post
                        Answer my questions first and maybe we will get closer to answering your question.

                        1) Who is accountable for delivering Cures?
                        2) What is the SCI Community? What characteristics does it have and what value can be drawn from it?

                        I could give you different (and sometimes long) answers depending on which angle I look at it, but that would be confusing and it would take too long.
                        It wasn't my intention to argue with you in case I gave you this impression.

                        I am going to leave it here and take one more break from CC.

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

                        Comment


                          #72
                          Should they inflict spinal cord injuries on animals for research? Yes and no for different reasons. Yes to reduce human suffering. No for ethical reasons. I think the ethics prevail. I'm not saying this is the reason why we don't have a cure. But it is one factor that limits the degree of research.

                          Comment


                            #73
                            Originally posted by BSgimp View Post
                            Why Don't We Have a Cure for Spinal Cord Injury?

                            1. Slow Methodologies of Medical Science
                            2. Complexity of Nervous Systems
                            3. Low number of people with SCI
                            4. Lack of Monetary Incentives
                            5. Lack of cooperation between Labs
                            6. Lack of Social Awareness
                            7. Big Pharma

                            I wonder how fast thing would go if Mark Zuckerberg would get SCI. Or some other billionaire. I think the best bet is to inspire Bill Gates to help us out.
                            I agree with pretty much all of your conclusions BSgimp, though I'd probably put Complexity of the nervous system as #1.

                            If you're talking a "true" cure, which to me means I can sever your spinal cord completely, let you be paralyzed for years and then fully (or even for the most part) restore the function of your spinal cord I think if Zuckerberg got SCI after winning the White House after becoming the world's first multi-trillionaire with a popularity of 99% and political control of both houses of congress and devoted the entire resources of the US to curing spinal cord injury we could have something resembling a cure in 50 years, and I feel like even given those resources that's a bit optimistic. Seems much more feasible to me to put a man on Jupiter than to cure chronic spinal cord injury. The biology of it is just a bitch.

                            Comment


                              #74
                              Originally posted by paolocipolla View Post
                              I could give you different (and sometimes long) answers depending on which angle I look at it, but that would be confusing and it would take too long.
                              It wasn't my intention to argue with you in case I gave you this impression.

                              I am going to leave it here and take one more break from CC.

                              Paolo
                              It wasn't argument-seeking. The questions weren't explicitly directed to you. I just hoped you would offer your answers as you have seen initiatives, organisations and hopes rise and fall over the last 10+ years. It's important that new groups don't go down the same rabbit holes as those advocates/activists before them and avoid making the same mistakes.

                              Comment


                                #75
                                I think PFP asks two very important questions for us to consider. Sadly, he does it after making sarcastic and smug comments. My experience with questions raised in this manner is that the author is either being rhetorical and feels that they already know the answer or that they don't actually care about other people's opinions. His response to Paolo that Paolo first needs to answer the questions before PFP even starts a dialogue underlines my concern over PFP's intentions.
                                This is not a high school debate team where we're trying to score points in front of an audience, it's a place where people bring their hopes and knowledge in the hopes of sharing information and even efficating a cure someday.
                                Smug and sarcastic comments lowers the level of discussion and even prevent discussion as no one likes to be made fun of for their opinion. It leaves people disengaged a d disinterested.
                                I'm not some kind of liberal who things all ideas are correct or even equal, but that should be decided through a discussion of facts and not through disparaging others.
                                I like a good laugh, but I'm not interested in doing so by making fun of other people's ideas, especially when i don't have my own ideas to raise. I also understand that things get heated and we may make snide comments, but this thread is not heated.
                                Let's have conversations that are based on fact and the merit of ideas. I think if we all do this we can make it a better board.

                                So since two questions were raised, I'd like to answer them, especially because they're good questions.

                                Cure is a commodity. Therefore it is the responsibility of the person who wants that commodity and the person who makes the commodity and that defines the relationship between the producer and the consumer.
                                Please don't take commodity to mean luxury (and therefore we can?t have it), but it's a thing to be made and sold (and please don't infer that that lowers the sincerity of the scientists who make it). But at some point, cure will be produced and then it has to be sold, and so the wheel turns. Whether the commodity will be sold to profit a company or society as whole also defines our relationship to cure.
                                *
                                Community itself is not a static thing. Groups are added to it and groups are deleted from it. The one basic thing that makes a community is common goal (usually in the face of some adversity). Community could dissolve with failure and have its solidarity weakened, orp get bigger with success thus increasing its solidarity.
                                SCI community is exactly the same as the above. If PFP means the SCI community that wants cure, then it's not the same as the whole of the SCI community as there are some who do not want cure or do not think that it is achievable. Again, some people from this group will be added to the SCI cure community, and some will believe that cure is not something the any longer think is possible and will leave the group.
                                *
                                Community is fluid and community can be built (it doesn't just occur in nature). So let's now look at what is now or could be possibly be the SCI cure community (SCICC). Does it exist now? Yes. It includes those on this page, even those on the edges. Those who we don't see on this page trying to get cure, and clearly includes both the injured and their family and friends. Are the scientists part of the community? Depends on how deeply involved they are with the community as a whole.
                                *
                                Cure and community are intrinsically linked. Cure as a commodity has to go somewhere if it's achieved, but it will not be achieved unless there is an active consumer market and/or demand.
                                People with SCI and their families and friends is not such a huge group, and the SCICC is much much smaller. Therefore, where does most of the research go, to the place where there is a market for the research (again, this does not take away from the scientists who have a huge commitment to curing paralysis, but we do all realise that money is needed and when money is invested, there needs to be return, either financial or social).
                                Now, I'm not saying that there won't be a cure if the SCICC community is small or weak, but it will take more time as it will not get the resources it needs (these resources are both private investment, private donations, government money, time, energy).
                                So, the value in the SCICC community is that it is what creates the both the market and the urgency. Strengthening the community means increasing the market for cure and the resources that it gets.
                                How do you build community, that's a different conversation, but a necessary one.
                                That's my short answer to PFP. Probably we will disagree, but hopefully we can have this debate in an intelligent and respectful way.
                                Originally posted by Fly_Pelican_Fly View Post
                                An inspirational leader to take us to the promised land? One ring to rule them all? There can be only one? I've seen this show before. We just need a couple of dragons and an electrically stimulated SCI zombie army uprising and we'll be ready to wage war on paralysis.

                                Serious questions:

                                1) Who is accountable for delivering Cures?
                                2) What is the SCI Community? What characteristics does it have and what value can be drawn from it?

                                FPF
                                Last edited by StemCells&AtomBombs; 8 Nov 2017, 11:02 PM.
                                Dennis Tesolat
                                www.StemCellsandAtomBombs.blogspot.com

                                "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
                                Martin Luther King

                                Comment

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