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Any interest in having a group of scientists help explain the emerging literature?

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    Any interest in having a group of scientists help explain the emerging literature?

    Hello all,

    The title pretty much explains it all. I have been browsing this care cure community as well as other social media platforms related to SCI and noticed that there may be demand for the scientists to help break down what is goin on in those papers, and help put things into perspective.

    I work at a spinal cord injury research center where myself and colleagues work predominately in rodent models. We have been looking for ways to engage more with the SCI community. As a basic scientist I want to be able to help people but recognize much of what we do is quite removed from work in humans. However, I came to realize that one of our useful skills is being an ability to understand the shenanigans in the papers that we produce. While we may not be able to give you all exactly the answers that we hope for, or may not be able to answer all questions you may have pertaining to the science, we can at the very least help break down the findings in the news articles and primary literature that seem to emerge on these types of platforms.

    Right now I am just trying to determine if there would be any interest in having internet Zoom meetings with a group of scientists to help answer questions about scientific topics and emerging literature. Because we are not allowed to share full-access to papers behind pay-walls on public forums, I see this as a way to help disseminate information that may otherwise be inaccessible as well as have experts in the field explain exactly what is going on. Depending on interest we could potentially make this a frequent thing.

    Please let me know if you think this could be of any benefit to you and if you would be interested in attending a meeting. If there is enough interest I will ask for recommendations of literature and topics that we can discuss. I would like for any decision on the topics we discuss to be driven by the community. Take care for now, I will monitor the thread accordingly.

    #2
    100%! I think most people on the threads would be interested in this. However, I think more than just discussing research, also providing insight into likelihood of translating into human trials would be something that everyone would particularly look for.

    Even something along the lines of aiming to have clinical trials is helpful. Additionally, if you could discuss the research around the world, particularly research from countries that do not provide their literature in English might also be helpful.

    Nonetheless, everything is welcomed. Posting on YouTube is helpful for many people who may not be able to make the time on a particularity but nonetheless have an interest.

    Good luck with your research!

    Comment


    • ActionXPotential
      ActionXPotential commented
      Editing a comment
      I think that what you said is part of what we had in mind. Break down what they did, is it relevant to acute or chronic SCI, what things are being done to get stuff like this to people and/or what implications does it have to change the way things are being done, or will be done, in people. However it is hard to provide any kind of accurate timeline for seeing things move from rodents to humans and anyone who says the know that timeline is lying. What we do need right now from the community is more communication between individuals with lived experience and the researchers, with the aims of hopefully igniting a sense of urgency to get things figured out and moved into humans. So for now I think that on our side, we can do a small part in this by filling a need to better disseminate scientific progress, its implications and intents, to the population its aimed to help.

    #3
    That sounds like a great idea. Keep us posted

    Comment


      #4
      yes that is what I always wanted and have always tried to get happening...the community always seems more engaged when an actual researchers visits, Jerry Silver has visited here a few times a while ago and always gets an ample discussion going ...and have you ever attended a working2walk symposium?

      www.u2fp.org
      "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


        #5

        "Any interest in having a group of scientists help explain the emerging literature?"

        Yes, this would be great!

        "...and have you ever attended a working2walk symposium?

        www.u2fp.org"


        Sam Maddox U2FP's newsletter is really good as well FYI :
        https://u2fp.org/get-educated/our-vo...eyi0M5ucVrH2fQ

        Comment


          #6
          Very interesting, I would like to join!

          Comment


            #7
            So im still going to wait a bit before moving forward with anything to see if others would be interested, then I will ask for recommendations of things to cover (such as a news reporting, original article, or overarching topic).

            For now I did want to say that for those interested there is a free SCI research conference being held at this website ( https://bit.ly/34A0T9z ) try this if it doesn't work (https://www.youtube.com/channel/UCon...wCypwAtEaQYsgA).

            I think the content is designed by researchers for researchers but please feel free to attend and ask questions! This website is actually part of an ongoing seminar series by researchers for both other researchers and the community that occurs every Tuesday (titled the IOSCIRS) all are welcome to attend and ask whatever questions you may want. The SCI researchers love hearing from the community and answer questions. We are very receptive and encouraging of attendance. (p.s sorry for the late notice, this conference is starting now, I think the videos and other videos are made available to watch later at your own convenience)

            Comment


              #8
              I’d definitely be interested and thank you for everything you’re doing! My daughter is completing her neuroscience PhD for May ‘22. I’d love to rope her into joining me tho you know she’s at the craziest crunch time now. Her thing is not SCI but I’d love her second set of ears.

              Comment


                #9
                Definitely interested.

                Comment


                  #10
                  So for those who expressed interest lets start trying to get a conversation going. What articles (news coverage or actual scientific paper) or general topic did you have in mind or would like help with interpretation.

                  Also I exist in Eastern Standard Time and could probably wrangle up the lab within reasonable hours in this time zone. is there any preference as to time?

                  Comment


                    #11
                    Originally posted by ActionXPotential View Post
                    So for those who expressed interest lets start trying to get a conversation going. What articles (news coverage or actual scientific paper) or general topic did you have in mind or would like help with interpretation.

                    Also I exist in Eastern Standard Time and could probably wrangle up the lab within reasonable hours in this time zone. is there any preference as to time?
                    I really have my eye on Nervgen and am interested in seeing what they do in the near future
                    "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


                      #12
                      I am glad that we have a number of companies or whatever working on Spinal cord injuries but in reality I wish there would be more of a collaboration to make a single entity all working on one goal and push one promising treatment ...I am having a hard time explaining it but I just wish they would "hivemind" this effort
                      "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


                      • whatisthislife
                        whatisthislife commented
                        Editing a comment
                        i agree, some sort of structure like how space agencies work.we need a NASA of neurological repair

                      • Sheri
                        Sheri commented
                        Editing a comment
                        Yes, yes, yes!

                      #13
                      Originally posted by lunasicc42 View Post
                      I am glad that we have a number of companies or whatever working on Spinal cord injuries but in reality I wish there would be more of a collaboration to make a single entity all working on one goal and push one promising treatment ...I am having a hard time explaining it but I just wish they would "hivemind" this effort
                      I'm with you lunasicc42, wish NervGen, Axonis, RenetX and all rest of the companies would work together. Just seems like exciting times with all these companies possibly holding a very important piece of the puzzle that could finally lead to a major breakthrough in SCI treatment and other neurological conditions.








                      "I'm manic as hell-
                      But I'm goin' strong-
                      Left my meds on the sink again-
                      My head will be racing by lunchtime"

                      <----Scott Weiland---->

                      Comment


                        #14
                        Originally posted by ActionXPotential View Post
                        So for those who expressed interest lets start trying to get a conversation going. What articles (news coverage or actual scientific paper) or general topic did you have in mind or would like help with interpretation.

                        Also I exist in Eastern Standard Time and could probably wrangle up the lab within reasonable hours in this time zone. is there any preference as to time?
                        Definitely interested in what Nervgen is doing as well as the spinal cord scaffold technology they have done in California and companies like matricelf. Seems like these approaches could be combined

                        Comment


                          #15
                          Originally posted by lunasicc42 View Post
                          I am glad that we have a number of companies or whatever working on Spinal cord injuries but in reality I wish there would be more of a collaboration to make a single entity all working on one goal and push one promising treatment ...I am having a hard time explaining it but I just wish they would "hivemind" this effort
                          Why the lack of collaboration? Because each research college or groups discoveries and/or any results are protected except for the results they (the institution or company) release. Each researcher signs a contract stating their research is property of whom ever they are or were working for.

                          Keep in mind (yes I'm the negative yet grounded in reality Nancy), there are decades and decades of cash flow for research, past, present, and future. In 50 years there will not be a cure, just past decades of donations for promises of false hope. Look how far back all the research goes. Decades of the same stuff with different labels & institutions. It took a quad to develop a powerchair with a ventilator. This was not done by big pharma or a research group dolling for publicity. It was an actual single person like you and me figuring it out despite the dangers.

                          Christopher Reeves was our best hope but even he was shut down due to using stem cell research.

                          This topic makes for good conversation at the coffee shop in the hospital or college. Keep it real, it's up to you to overcome the simplest (to AB's) task. Everyday is a struggle, recognize it, deal with it.

                          As I've stated many times, all the research is for new injuries (6 months or less). Yet they cater to those of us years into an injury in hopes we'll donate our estate to the multi labeled (yet single issue) cause when we die. Only 300 million quads in the USA is not enough motivation for a cure. Instead we are a target market for research donations.

                          No, I did not read the article. They are all the same with a few different words. Once you've read enough of them you'll understand.

                          It's a new life, a different life, not as it once was but what can we make of what we have.
                          Attack life, it's going to kill you anyway
                          Steve Mcqueen (Mr Cool)

                          Comment


                          • ActionXPotential
                            ActionXPotential commented
                            Editing a comment
                            There is a fairly good degree of collaboration amongst SCI researchers (relative to other fields) but you are correct that we tend to keep our research ideas and directions protected out of concern for our own careers. Many of these walls are slowly being broken down in the research world. There are a core group of us that (most of America and Europe) that work quite closely to avoid redundancy and work in parallel rather than in competition. There are several complicating aspects to why progress moves so slow, one of which is not having identified singular research priorities (acute vs chronic, basic discoveries vs translational approaches etc.). We can dissect down further and further what is important research until we approach the level of a single molecule. Such a diffuse focus can help expand our understanding of SCI and identify new actionable targets that can help, but also doesnt do much to help bring any one of these findings closer to treatment in humans.

                            When we evaluate how long it takes something to go from mouse-to-man it is important to look back in history to see when the line of research started. To take stem cells for example, a gentleman by the name of Ramon e Cajal who is considered the founder of modern Neuroscience, was the first person to recognize that the peripheral nervous system regenerates but the central nervous system does not, so he took the peripheral nerves and put them into the spinal cord and saw regeneration. This was done literally about 100 years ago. We now call this approach (albeit a bit more refined) Shwann cell transplantation, of which there are clinical trials going on in the Miami project (as well as other stem cell trials happening around the US). There have been other countries offering stem cell transplants for a decade or two now, but in general the work has taken generations of scientists to manifest clinically.

                            I think the question we need to answer is why? Why does it take so long? Partially because even a simple animal experiment takes between 2-5 years to complete (no matter how small and incremental the work is)? Partially because we are incentivized to discover rather than develop? There are many reasons, some more forgivable than others. But I think your frustrations are pretty on point and I wish more in the scientific community would be motivated by the same reasons. There has been a push in the SCI community to get people living with SCI involved in the research process even to just sit in on weekly lab meetings. Help to give opinions on what should and shouldn't be a priority, and to ask the questions that us scientists really need to hear (we are looking for disruption of our current mindset). Due to COVID we have developed a pretty proficient infrastructure to do most lab meetings virtually over zoom, or to have mixed in-person/Zoom meetings so if you (or anyone else) wanted to get involved without much commitment that can happen and the contribution would be very much appreciated.

                            I do not want to get on the "hype wagon" for research, in fact that is the opposite reason I am here, I do agree with, or understand, just about everything that you said. I will point out that some of the things coming through the translational pipeline do actually have potential to work on a spectrum of effect in chronic SCI conditions and have shown some efficacy in chronic SCI either in humans or in animals. Stem cells, CSPG antagonists, Myelin Inhibitor antagonists, and epidural stimulation which have withstood the test of time for at least 20+ years. Each of these is at the early stages of human trials and each has potential to help chronic SCI (some are, of course, starting in acute SCI unfortunately). The questions that are hard to answer are, how long will it take to move to chronic SCI in humans (could be many more years), and what can be an anticipated effect (likely small for most, but a small effect can be a big difference for some). I really dont want to be the one to say it but you are likely correct in that a true, bonafide cure for SCI is still a long-way away, at least how I would envision in my mind as being sufficient recovery of both motor and sensory functions such that things are near-normal. Until then, however, I am just hoping that something, anything, can persevere into use for humans to bring something, anything, back, and I really hope that we can start recruiting more research effort into the chronic SCI setting, because as you correctly stated, most discovery efforts are directed at the acute pathology.
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