Announcement

Collapse
No announcement yet.

W2W a few weeks later

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

  • #16
    Originally posted by LetsGo View Post
    There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics.
    There are several trials for chronic injuries. You are just not aware of them.
    http://unite2fightparalysis.org/clinicaltrials

    Originally posted by LetsGo View Post
    Paolo, with all due respect you are wrong...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 think that many people would agree that Paolo's understanding of the situation is quite clear. If you are concerned about people getting their facts straight before making inaccurate statements, please refer to your quote regarding chronic trials referenced above.

    Originally posted by LetsGo View Post
    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 would bet a lot of money that Dr. Silver's research gets to clinical trials on chronic injuries before anything coming from MP. To think what he or Wise or a few other more promising researchers could have accomplished with $250 million. I would probably not be typing this right now. THAT is disheartening.

    Originally posted by LetsGo View Post
    Seventh, Ineedmyelin, attacking Rick or Marc for not being "understanding" of the condition of those paralyzed is bullshit. You may not agree with where they spend their money but to attack his commitment to helping you and millions others is beyond pale.
    If Marc or Rick know how the researchers at their organizations are getting leapfrogged in the race to develop therapies, they would make big changes in the way that money is spent. If they are aware and are either complacent or complicit, that would be beyond the pale

    Originally posted by LetsGo View Post
    Look at cancer and AIDS and the billions that have been spent but the research didn't lead to cure. No one attacks their scientists for "wasting" money... People are happy to keep cancer research going. Under your logic,Susan G. Koman who has raised billions should be shut down because they have found a cure to most cancers. They are a worthless organization like The Miami Project, right? There is no logic to that line of thought.
    Millions of people with cancer and HIV are living active and relatively normal lives with relatively normal lifespans. Magic Johnson, Greg Louganis, Lance Armstrong, Sheryl Crow, Scott Hamilton, the list goes on and on. To keep promoting organizations like MP or RHF when they have produced almost no tangible results is illogical.


    Originally posted by LetsGo View Post
    There is enough money in this world for everyone.
    That was just so asinine that it deserved a second read...

    Originally posted by LetsGo View Post
    People praise the Christopher Reeve folks when they get "big-name" celebrities to their events but if The Miami Project gets a celebrity it's a bad thing. You want to replicate what is successful. Why not encourage Dr. Silver and everyone else to hire more fundraisers. If they are good, they pay for their own salary and pay for those labs to be able to expand their research programs.
    Not to defend CDRF, but they only spend 12.4% of their income on fund raising. MP spends 26.9%
    http://www.charitynavigator.org/inde...summary&orgid=5066
    http://www.charitynavigator.org/inde...ary&orgid=7876
    And are you suggesting that one should aspire to the "success" that is the Miami Project or RHF? People should be encouraged to donate to the most promising researchers, not the ones with the best poster boys.

    Originally posted by LetsGo View Post
    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 people did this MP and RHF would not be operating right now.
    Last edited by KofQ; 11-07-2011, 03:28 PM. Reason: broken links

    Comment


    • #17
      Thank you for this, KofQ.

      Comment


      • #18
        Originally posted by ineedmyelin View Post
        on a personal level i will work hard to attend w2w next year.

        conferences like w2w are great but it seems that once the meeting are over and everyones returns to thier home that buzz/excitement seems to die down a bit. not saying that nothing good comes from these conferences just think that we more of a year long agenda so as not to lose the momentum. we can take the bull by the horns, we just shouldn't let go for a minute.
        I do hope you are able to attend the conference next year.

        Researchers, advocates, sci folks and spinal cord injury organizations from all over the world attend the conference. It lays the groundwork and proposed agendas for dozens of the groups that are working on efforts and activities for 2012. The momentum isn't lost, in fact it reinvigorates and lays focus on the next years agendas for the cure of spinal cord injury. In addition, warriors went to capital hill to begin the push for the ARM bill. They continue to work on that every day.
        Last edited by GRAMMY; 11-07-2011, 03:17 PM.
        http://spinalcordresearchandadvocacy.wordpress.com/

        Comment


        • #19
          We shouldn't be looking forward to each year's W2W rally - we should look to make them redundant - it is the image of years and years of these rallies stretching out in front of me as I get old that scares me, just like the years since my accident have slipped away

          Comment


          • #20
            Originally posted by Christopher Paddon View Post
            Good points LetsGo - I actually think Miami Project could be on to something (I think it has been researched exhaustively) - I'm just scared at how long it will take to get to the clinic - 5 years rather than 10 please
            Would the sci community be better off to just send donations to MP and not hold the Working 2 Walk conference then?
            http://spinalcordresearchandadvocacy.wordpress.com/

            Comment


            • #21
              redundant because a cure has been found I mean

              Comment


              • #22
                Originally posted by Christopher Paddon View Post
                redundant because a cure has been found I mean

                What cure has been found?
                "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


                • #23
                  Originally posted by KofQ View Post
                  There are several trials for chronic injuries. You are just not aware of them.
                  http://unite2fightparalysis.org/clinicaltrials



                  I think that many people would agree that Paolo's understanding of the situation is quite clear. If you are concerned about people getting their facts straight before making inaccurate statements, please refer to your quote regarding chronic trials referenced above.



                  I would bet a lot of money that Dr. Silver's research gets to clinical trials on chronic injuries before anything coming from MP. To think what he or Wise or a few other more promising researchers could have accomplished with $250 million. I would probably not be typing this right now. THAT is disheartening.



                  If Marc or Rick know how the researchers at their organizations are getting leapfrogged in the race to develop therapies, they would make big changes in the way that money is spent. If they are aware and are either complacent or complicit, that would be beyond the pale



                  Millions of people with cancer and HIV are living active and relatively normal lives with relatively normal lifespans. Magic Johnson, Greg Louganis, Lance Armstrong, Sheryl Crow, Scott Hamilton, the list goes on and on. To keep promoting organizations like MP or RHF when they have produced almost no tangible results is illogical.




                  That was just so asinine that it deserved a second read...



                  Not to defend CDRF, but they only spend 12.4% of their income on fund raising. MP spends 26.9%
                  http://www.charitynavigator.org/inde...summary&orgid=5066
                  http://www.charitynavigator.org/inde...ary&orgid=7876
                  And are you suggesting that one should aspire to the "success" that is the Miami Project or RHF? People should be encouraged to donate to the most promising researchers, not the ones with the best poster boys.


                  If people did this MP and RHF would not be operating right now.
                  Right on ! tell him brother !!!
                  keep (rolling) Walking

                  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


                  • #24
                    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)

                    Comment


                    • #25
                      Originally posted by LetsGo View Post
                      Paolo, with all due respect.............
                      When a post start this way it doen't look very promising..

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

                      Comment


                      • #26
                        Originally posted by LetsGo View Post
                        ..... What you are referencing is Dr. Dietrich saying that the first patients for the Schwann cell trial will be on acutes. That does not mean they are not conducting research on chronic injuries. THEY ARE.
                        Really?? Please let me know what, I'll be happy if you can prove me wrong.

                        Why did they do all the preclincal work with schwann cells on acute SCI instead of chronic SCI?

                        They could have done the preclinical work on rats 3 months after SCI and now go to clinical trials on chronic SCI as all of us are chronic.

                        Does that make sense to you?

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

                        Comment


                        • #27
                          Originally posted by LetsGo View Post

                          .....Dr. Dietrich said they will also be conducting the schwann cell trials on chronic injuries, just not until the first 8-10 acute patients have been treated. Just because they are starting with acute injuries doesn't mean that they are not conducting ongoing research on chronic injuries. They have and are. They are testing all types of animal models in both the acute and chronic setting. I think you need to accept that the biology of repairing the nervous system is much more complex than in acutes but that most scientists test their studies in both.
                          Ok 8-10 patient with acute SCI plus a few years follow up is going to take many years just to find out that schwann cells are safe but don't improve function in acute SCI.
                          Then, maybe, same phase I/II on chronic SCI to prove again schwann cells are safe but not effective in chronic SCI.

                          Is that ok for you?

                          BTW I hope you know that what I have just said above is based on strong animal data and on a clinical trial on humans.

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

                          Comment


                          • #28
                            Originally posted by LetsGo View Post

                            Dr. Pearse who is one of the lead scientists on the schwann cell trial research is also conducting research using OEG cells, schwann cells, IL-10, and methylprednisolone specially for chronics. I also know he has aother ongoing studies with different combination approaches to treating chronic injuries. Again - just because the surgeries are starting with acute doesn't mean chronic research isn't ongoing.
                            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
                            In God we trust; all others bring data. - Edwards Deming

                            Comment


                            • #29
                              Originally posted by LetsGo View Post

                              ....everyone needs to stop bashing The Miami Project and their efforts to begin with actutes. There are no other researchers in the world who are conducting rigerous, published trials that will begin with chronics. If the scientific field worldwide could do this, they would. Obviously there is a reason EVERYONE is starting with acute injuries but that doesn't mean chronic research isn't being done simultaniously.
                              Here you prove me that you are not well informed at all.
                              I now several researchers that focus mainly on chronic SCI.

                              Just think about the Stem Cell Inc. trial, they are doing a clinical trial on people with SCI up to one year post that I would say is chronic SCI.

                              The problem is that to set up a chronic SCI study on animals it is more complicated and takes more work and it will probably complicate life of researchers when it comes on plannong their vacations etc..
                              Some researchers a little drink told me that

                              Then as you may know chronic SCI has some advantages as, for example the injury site is stable and has less variables to isolate..

                              So please try with better arguments!

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

                              Comment


                              • #30
                                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, it would be helpful if you went on our website and signed up for our newsletters. You would be better informed of our work. U2FP hasn't held a rally since March 2007.

                                If you have any thoughts you would like to share with us, please send them to donna@unite2fightparalysis.org We're always open to hearing from the community that we are dedicated to helping.
                                "Our lives begin to end the day
                                we become silent about things that matter."
                                - Martin Luther King Jr

                                Comment

                                Working...
                                X