Announcement

Collapse
No announcement yet.

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

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    There are at least two things working against a cure:

    1. Profitability
    If someone creates a cure that doesn't require taking a pill for the rest of our lives then their company won't make much money.

    2. Research dollars continuum
    Researchers continue to get funding for things with promise that fizzle in later research phases. i.e. if you're a researcher and create something that can be commercialized then you are far enough along that you'll lose funding for your research.
    T3 complete since Sept 2015.

    Comment


      #17
      Originally posted by Jim View Post
      The SCI Community has no one to blame but ourselves. We have not organized and demanded a cure. When is the last time we lobbied our representatives for increased funding? Researches are working their asses off while we as a collective do nothing.
      I've heard this before and call BS. Remember the old stem cell Bush era thing and we all paid to send test tubes to Washington? Nothing ... the demonstrations in DC ... nothing.

      It needs to happen to another Chris Reeve, as sorry as I am to say that.
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

      Comment


        #18
        Originally posted by lynnifer View Post
        I've heard this before and call BS. Remember the old stem cell Bush era thing and we all paid to send test tubes to Washington? Nothing ... the demonstrations in DC ... nothing.

        It needs to happen to another Chris Reeve, as sorry as I am to say that.
        I agree 100%. As bad as i feel saying it, we will have a cure when a person in a high place of power is paralyzed or their kid is. As far as the SCI community toting the blame I don't know about that. How many millions has TMP raised? Yet here we sit.

        Comment


          #19
          Originally posted by lynnifer View Post
          I've heard this before and call BS. Remember the old stem cell Bush era thing and we all paid to send test tubes to Washington? Nothing ... the demonstrations in DC ... nothing.

          It needs to happen to another Chris Reeve, as sorry as I am to say that.
          You call bs, but here we sit.

          My point is, there has not been a sustained group effort/movement.

          Our #'s and stories are very powerful and can make a huge impact. Not the inspirational bs, but the ugliness of SCI that we all know. We should be meeting in Washington every few years to fight for more funding.

          If we don't mobilize and fight, we get what we get.

          Comment


            #20
            Originally posted by Jim View Post
            You call bs, but here we sit.

            My point is, there has not been a sustained group effort/movement.

            Our #'s and stories are very powerful and can make a huge impact. Not the inspirational bs, but the ugliness of SCI that we all know. We should be meeting in Washington every few years to fight for more funding.

            If we don't mobilize and fight, we get what we get.

            I mostly agree with you Jim.

            What has happened in SCI research it's a long story to explain to SCI people who recently joined the "SCI club", but before we ask for more funding we should make sure SCI research money has been spent properly, which, in my opinion, it's not the case.

            I also believe the SCI community has been misled about what's has been done in SCI research so that they would just be happy with what's happening (all kind of SCI research is good) and all they can do is help raising more money for this or that foundation.

            That's not going to make a cure happen. Just like doing one more trial with UCB cells is not going to help, but for sure it will absorb many millions that could be directed to find out how to regenerate the chronically injured spinal cord.

            Just my opinion.

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

            Comment


              #21
              Paolo,

              This ChinaSCINet Phase II Safety Study turned chronic completes into incompletes. These subjects were injured from 2-17 years. Fifteen out of twenty minimally regained the ability to step for hours with upper body supported walkers, some progressed further. Over half regained bowel and bladder function.

              Did you not look at the SCIM Scores?

              Do you expect researchers to deliver a cure with nothing in between?

              This trial changed lives.

              You keep stating it shouldn't go forward, why?

              Comment


                #22
                I agree with Jim. Maybe not as far as assigning blame, but to say cure is up to us. Funny thing to say that the goal of this medical miracle, cure, is up to us, but I seriously believe that it is.
                It's not something that can be done easily, not because of the effort it takes, but finding out what to agitate for. While
                Jim raises as good point about lobbying I think we have to do more thinking on what we lobby for.
                I was actually having this conversation with a comrade in cure yesterday. A very experienced person he stated that first he thought it was the money, so he got the money. Then he thought it was the relationships (which thr money can build) so he went after that. In the end I think we both concluded that the system itself is not set up for cure and finding who to reset that system is fundamental.
                I don't know the exact answer but I hope to explore this in further blogs on www.stemcellsandatombombs.blogspot.jp.
                Like I said, I don't know all the answers, but I think I know some. One is rewarding the scientists who produce so they are not forced into having to waste money having to raise funds or got to a tech company. The researchers I have spoken to would prefer to be left alone to research and not have to chase the money train. There is some thinking on this point already if you search "prizes not patents". Secondly, I believe that the way money is doled out by the NIH and other bodies needs to be more results oriented. In fact, they could divide the money between basic science and other projects which could be results oriented (e.g. pre clinical and clinical work).
                The one point I would believe in firmly is that if the way the system itself is organised is the main problem, then only government (and thus the necessity to lobby) can resolve the problem.
                I found some interesting articles in the Lancet the other day that you should have a look at which talks about some of the failures in research.
                http://www.thelancet.com/series/research

                https://www.google.co.jp/amp/s/amp.f...7-2359a58ac7a5

                Originally posted by Jim View Post
                The SCI Community has no one to blame but ourselves. We have not organized and demanded a cure. When is the last time we lobbied our representatives for increased funding? Researches are working their asses off while we as a collective do nothing.
                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


                  #23
                  Going forward what could a possible path to a cure look like that bypasses these hurdles? Dr Silver seems to pretty much have chronic SCI cracked from what I can gather. What barriers is hit going to hit? His peptide treatment seems quite innocuous to me when there are athletes banging peptides all over the place.
                  What would a Musk like intervention look like?

                  Comment


                    #24
                    Cells. Silver’s work still has a long way to go. I believe in it, but in for the long game there. What he’s achieved has been amazing.

                    Back what though? No one has a viable treatment or cure, yet.
                    Last edited by lynnifer; 2 Nov 2017, 7:20 AM.
                    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                    Comment


                      #25
                      Originally posted by Jim View Post
                      Paolo,

                      This ChinaSCINet Phase II Safety Study turned chronic completes into incompletes. These subjects were injured from 2-17 years. Fifteen out of twenty minimally regained the ability to step for hours with upper body supported walkers, some progressed further. Over half regained bowel and bladder function.

                      Did you not look at the SCIM Scores?

                      Do you expect researchers to deliver a cure with nothing in between?

                      This trial changed lives.

                      You keep stating it shouldn't go forward, why?
                      Jim, do you plan on participating in the US trial since you're so bullish about it? When do we get to see you stepping for hours in a walker?

                      Comment


                        #26
                        Originally posted by StemCells&AtomBombs View Post
                        ...Like I said, I don't know all the answers, but I think I know some. One is rewarding the scientists who produce so they are not forced into having to waste money having to raise funds or got to a tech company. The researchers I have spoken to would prefer to be left alone to research and not have to chase the money train...
                        SC&AB, I'm curious as to what you mean by "rewarding scientists who produce". Do you mean produce results of functional return in studies? Or something else? I'm just asking for clarification.

                        Comment


                          #27
                          Originally posted by lynnifer View Post
                          I've heard this before and call BS. Remember the old stem cell Bush era thing and we all paid to send test tubes to Washington? Nothing ... the demonstrations in DC ... nothing.

                          It needs to happen to another Chris Reeve, as sorry as I am to say that.

                          Hmmm... Tom Hanks would be an ideal candidate...
                          T3 complete since Sept 2015.

                          Comment


                            #28
                            Mark Zuckerberg

                            Originally posted by Mize View Post
                            Hmmm... Tom Hanks would be an ideal candidate...
                            No not Tom Hanks. If Mark Zuckerberg sustained a spinal cord injury at C1-C2 I bet research and funding would happen.

                            I haven't made my full comment on this topic but this was part of it.

                            Ti
                            "We must overcome difficulties rather than being overcome by difficulties."

                            Comment


                              #29
                              Much better idea t4m. Maybe Zuckerberg and Musk in a Hyperloop demo?

                              (FYI, I really don't wish SCI on anyone and this thread tangent is merely in jest)
                              T3 complete since Sept 2015.

                              Comment


                                #30
                                One idea is "prizes not patents". It's quite an interesting idea (I think it was once introduced in thr American senate by Sanders before he became Bernie.
                                I've done quite a bit of reading about it.
                                Google "prizes not patents" and you'll see a lot about it, even from noble winning economists like Joseph Stiglitz.
                                In this case, I don't mean the prize contests that we see around, but funded by the state. The theory is that it would also save the state money as the patent would be in the public domain. This also builds research as anyone could then use the non-patented research for free.
                                Originally posted by tomsonite View Post
                                SC&AB, I'm curious as to what you mean by "rewarding scientists who produce". Do you mean produce results of functional return in studies? Or something else? I'm just asking for clarification.
                                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

                                Working...
                                X