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    #91
    Originally posted by Scaper1 View Post
    Would you rather there be no funding?

    Sorry, but this thread is incredibly frustrating. Whether we like it or not, whether the system is fair or not, "drumming up funds" is how it works. I'm sure applying for a research grant is a real hoot. Would anybody here bother with all this grief if you weren't personally invested in sci? I'm grateful for the supporters we do have.
    no funding = bad funding

    no funding is no different than nih funding non-curative research.

    Comment


      #92
      Originally posted by keeping on View Post
      Wise, you have expressed more and more lately of lack of funding. We understand, especially with the priorites of this gov't. My question is; if your trial shows success(we sure hope so), what would be the fundamentals for funding, delivering the therapy to our community, and other possible treatments? Your tireless work and our tireless waiting has to translate into some positve outcome. All I can say now is I give to the community the best I can and contact groups and individuals who might help;ie. Congressional Members, Research Groups, and others.
      Keeping on,

      While I may not talk about the lack of funding every day, funding is on my mind every day and in my dreams every night. How can it not? I spend about a third of my time trying to raise money. I spend another third of my time traveling.

      ChinaSCINet. We don't have enough money to get the clinical trials going in China as fast as they could be. Lack of funding is one reason why things are going slowly. We are holding a trial in Hong Kong but cannot open the trials up to non-Hong Kong residents due to lack of funds. Because we don't have US$200,000 to pay the extra expense, we may lose 3 months. I have only two staff members in Hong Kong to oversee all the meetings and trials that are going on and being planned for ChinaSCINet.

      SCINetUSA. Many hospitals in the United States have come to me, asking to join SCINetUSA, but we can accept only those hospitals that have the capability to raise funds for the clinical trials because we can't raise the money to pay for the trials in their centers. Last year, with help of the Travis Roy Foundation, we spent $100,000 on four meetings of U.S. investigators (including a trip of 15 U.S. doctors to China to see the surgery and the 6:6:6 rehab program). These meetings and trips convinced U.S. doctors to join SCINetUSA. We had to stop the meetings for the lack of money.

      SCINetEurope. Investigators in several countries have approached us about starting trials in Europe: Norway, Italy, and Spain. I am still trying to find the time to go to these countries. Do you know why I travel so much? It is because we cannot afford to pay anybody else to do so. I am cheap. In fact, I am free and even pay for my own travel. Who else can or will do this? In the past twelve months, I have been to Europe three times, mostly on my own dime unless I can find a meeting that will pay my way.

      SCINetIndia. I have been to India three times in the last twelve months. It has been difficult getting Indian neurosurgeons to take the time to travel to our ChinaSCINet meetings because they are so busy (i.e. have to take care of their patients). So, I have to go there. In my opinion, it will take much work, staff, and funds to get trials going in India. At the beginning, I would need to travel there every month, like I have to for ChinaSCINet for the past five years.

      The rest of the time, I raise money, teach, and do spinal cord injury research at Rutgers. By the way, that is my real and only job. I am thankful that Rutgers allows me to do all the clinical trial work. And, in case people have not heard, the new governor of New Jersey just cut the heart out of Rutgers' state budget [source]http://president.rutgers.edu/letter_031710.shtml[/source] after four years of consecutive cuts. Our center is struggling to survive.

      The funding that we have received for organizing the clinical trials (HKSCIFund and Travis Roy Foundation) has already helped us achieve a miracle. All the clinical trials are starting and being done by hundreds of doctors who are donating their time and hard work. They are doing it because they care and understand the promise of the therapies. I am tired of hearing complaints about scientists and doctors.

      Wise.
      Last edited by Wise Young; 4 Apr 2010, 12:44 PM.

      Comment


        #93
        Originally posted by Wise Young View Post
        We have not been in the faces of our political leaders, telling them what is important to us. Many people in the White House and Congress are probably happy that there aren't people in wheelchairs holding their feet to the fire, telling them that their priorities are upsidedown.


        Wise.
        WHAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAT?
        I have been saying for years we need to get in their face, but this forum and you dr young says no. we should be nice and friendly and think positives, like a bunch of wimps. when cr was alive, i said he needs to stop being so friendly and go on tv to shame bush and congress. noooooooooooo, DA we need to be more friendly and accommodating. there were even a few clowns saying we should hold back the sci cure until after a cancer cure is found.

        being friendly weak punks have gotten us nothing and will get us nothing.

        Comment


          #94
          Originally posted by DA View Post
          this was not an attack on dr young. althougth dr young does defend this sorry ass system.
          And this is what I don't understand. You hear things about shoestring budgets and not enough community participation and all the other funding problems with sci research yet there never seems to be any consideration to maybe changing the financial resources model. no matter if its the communities fault or the researchers fault the current model isn't working. Maybe the status quo funding methods can't be applied to sci. Maybe we have to use some creativity and out of the box thinking to fund our research. why bang your head against a wall thats not moving?

          I have been one of the few proponents of maybe using for profit experimental procedures to fund and publish usable data and research. we see from the medical tourism thats already happening that people are paying regardless of what we feel about the procedures effectiveness why not harness that into things that help the whole community. any time I brought this up I hear about how unethical this is, but how much more ethical is letting millions suffer begging and hoping the nih graces us with the funds needed to do research.

          maybe experimental procedures isn't the answer. maybe theres some other method that would work better. the larger point being forget whats not working and find what does.

          When I first got on this board DA seemed to be some crack pot with wild predictions and conspiracy theories. as time went on and reality kicked in I saw how correct and practical he was about a lot of things. Dr. Young have you ever considered maybe your to far on the inside looking out. you ever look at things from the perspective of an outsider and see the freedom there is. just because there is a system in place doesn't mean thats the only or best path. I dont say this to attack or demean you or even question you (I know you have a far better grasp of this situation than I ever will) but just as a human I know sometimes a change of perspective can open people up to unseen oppertunities and possibilities.. personally I feel there is a heavy perspective problem in our whole community. we are trapped focused on the intricate complexity of problems that if approached differently would probably be tooken care of simply... we just need that thinker that can bridge that gap and see that the circle peg would work better in that round hole...

          I know my words come off overly simplistic, but many times solutions are a lot simpler than we expect...

          Comment


            #95
            Originally posted by Buck_Nastier View Post
            How did you read my post as a negative comment toward funding?

            Yes, I would rather there be no funding.

            I support whatever it takes to raise money. My post from two months ago.



            https://www.carecure.net/forum/showp...4&postcount=39

            People and there ridiculous attempts to start an internet fight. LAWL!
            Buck, I apologize. I was inferring cynicism where there was none. My bad.

            Comment


              #96
              Originally posted by Scaper1 View Post
              Buck, I apologize. I was inferring cynicism where there was none. My bad.
              No problem.

              Comment


                #97
                Originally posted by DA View Post
                WHAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAT?
                I have been saying for years we need to get in their face, but this forum and you dr young says no. we should be nice and friendly and think positives, like a bunch of wimps. when cr was alive, i said he needs to stop being so friendly and go on tv to shame bush and congress. noooooooooooo, DA we need to be more friendly and accommodating. there were even a few clowns saying we should hold back the sci cure until after a cancer cure is found.

                being friendly weak punks have gotten us nothing and will get us nothing.
                When the good guys get mad something is gonna change...
                In God we trust; all others bring data. - Edwards Deming

                Comment


                  #98
                  Originally posted by cheesecake View Post
                  The new stats raised a lot of attention on Capitol Hill. Efferts are being made for increased funding based on new stats.

                  Many people took serious notice of the new numbers---hopefully money will follow soon.
                  cheesecake,

                  I feel it is taking too long, & that it is not a good sign to me. You may wanna consider to tell us a bit more &/or ask for some help to put more pressure where it is needed.

                  I also hope that if money will come out for people with paralysis a good part of it will be directed to cure SCI. You know what I mean... CDRF seems not to have anymore as a main target the cure issue, but I hope to be proved wrong.
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    #99
                    Originally posted by paolocipolla View Post
                    When the good guys get mad something is gonna change...
                    not enough of us is getting mad. it seems like everyone wants to hope and wish things get
                    better. but if not, everyone is content and accepting of their sci which need not to be.

                    Comment


                      Cheesecake- I also feel that it has been too long. How is it helping us today? When will it help us? What more can we do as population to make it help us? If another rally is needed -- who's going to take the lead?

                      DA- maybe it's not that we are not mad -- but rather we are channeling our madness into different ways that are completely unproductive. We need a uniting force to spark our anger and make the government ashamed that it hasn't provided us adequate funds. CDRPF might have been that at one point in time -- who is there now.

                      Please correct me if I'm wrong, but there are also *many* foundations out there whose sole purpose is to raise funds to cure paralysis. A month or so ago I tried to start a list of these foundations. Now, the purpose of a nonprofit organization is to not make a profit and have no money at the end of the year. Right?

                      Now -- hypothetically speaking there could be a few foundations that are generating substantial funds but paying the director/ceo an exorbitantly high percentage rate.

                      I have heard 'stories' of a particular foundation whose owners generating large funds and allocate a meager portion to research. This is a disservice to our community and I feel it slows down our ability to unite and direct funding. What can we do about it?

                      On another note --
                      Does anyone know how Will Ambler fared after speaking with Presidential advisers?
                      Last edited by Chaz19; 4 Apr 2010, 8:11 PM.

                      Comment


                        The Miami Project has million(s) for clinical trials.

                        Comment


                          Eric,

                          What financial resources model do you have in mind? The for-profit model has been and is still being tried. For example, I helped found Acorda Therapeutics for that reason. A non-profit model is possible but funding to start a non-profit therapeutics company is hard to get, unless one is a Rockefeller or a Gates. A government funded model is also possible but that is essentially what an NIH-funded laboratory would be.

                          Wise.



                          Originally posted by Eric.S View Post
                          And this is what I don't understand. You hear things about shoestring budgets and not enough community participation and all the other funding problems with sci research yet there never seems to be any consideration to maybe changing the financial resources model. no matter if its the communities fault or the researchers fault the current model isn't working. Maybe the status quo funding methods can't be applied to sci. Maybe we have to use some creativity and out of the box thinking to fund our research. why bang your head against a wall thats not moving?

                          I have been one of the few proponents of maybe using for profit experimental procedures to fund and publish usable data and research. we see from the medical tourism thats already happening that people are paying regardless of what we feel about the procedures effectiveness why not harness that into things that help the whole community. any time I brought this up I hear about how unethical this is, but how much more ethical is letting millions suffer begging and hoping the nih graces us with the funds needed to do research.

                          maybe experimental procedures isn't the answer. maybe theres some other method that would work better. the larger point being forget whats not working and find what does.

                          When I first got on this board DA seemed to be some crack pot with wild predictions and conspiracy theories. as time went on and reality kicked in I saw how correct and practical he was about a lot of things. Dr. Young have you ever considered maybe your to far on the inside looking out. you ever look at things from the perspective of an outsider and see the freedom there is. just because there is a system in place doesn't mean thats the only or best path. I dont say this to attack or demean you or even question you (I know you have a far better grasp of this situation than I ever will) but just as a human I know sometimes a change of perspective can open people up to unseen oppertunities and possibilities.. personally I feel there is a heavy perspective problem in our whole community. we are trapped focused on the intricate complexity of problems that if approached differently would probably be tooken care of simply... we just need that thinker that can bridge that gap and see that the circle peg would work better in that round hole...

                          I know my words come off overly simplistic, but many times solutions are a lot simpler than we expect...

                          Comment


                            Dr. Wise I am in the process of embarking upon a career as a filmmaker, with the potential to really reach the masses( I recently hooked up with a known hollywood actor to form a film production company, and we putting together a feature film as I type this.) You have not heard much from me in the area of finding a cure for SCi. The reason for this is because I believe in my heart that I will be afforded a platform through my career choice where I will be able to reach the masses and put pressure on these politicians to use their power to expedite finding a cure for SCI injuries. I think you are a GREAT man for your selflessness and altruism. Anyone who cannot see that. need to have a catharsis and check themselves. I can tell that you are starting to feel discouraged and I implore you to not let the naysayers cause you to feel like this. There are myriad people who appreciate all you have given to us, and I promise you that once I get that platform I will walk hand in hand with you to defeat SCI. You have my word on that.

                            Comment


                              I would remind folks who think that human trials should begin immediately that there are enormous costs to conducting "proper" ethical and scientific trials. There have been several "therapies" delivered for-profit to people that by-passed the more rigorous and costly standards of "good practice". Have any of these therapies produced cure?

                              What is the real world short-cut to cure? Not the "if I were king and ruled the world" short-cut, but the one that real doctors and real companies and real governments could deliver to real patients to produce real cures?
                              Foolish

                              "We have met the enemy and he is us."-POGO.

                              "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                              "Dream big, you might never wake up!"- Snoop Dogg

                              Comment


                                Originally posted by semajh7 View Post
                                Dr. Wise I am in the process of embarking upon a career as a filmmaker, with the potential to really reach the masses( I recently hooked up with a known hollywood actor to form a film production company, and we putting together a feature film as I type this.) You have not heard much from me in the area of finding a cure for SCi. The reason for this is because I believe in my heart that I will be afforded a platform through my career choice where I will be able to reach the masses and put pressure on these politicians to use their power to expedite finding a cure for SCI injuries. I think you are a GREAT man for your selflessness and altruism. Anyone who cannot see that. need to have a catharsis and check themselves. I can tell that you are starting to feel discouraged and I implore you to not let the naysayers cause you to feel like this. There are myriad people who appreciate all you have given to us, and I promise you that once I get that platform I will walk hand in hand with you to defeat SCI. You have my word on that.
                                semajh7, thank you for young commitment. In many ways, movies are the greatest communication vehicles of our time. They are long enough to provide a detailed story but not too long as to lose most of the audience. Thus, Al Gore's movie "An Inconvenient Truth" was an incredible example of great movie making that galvanized billions of people to do something.

                                People often equate publicity with money. In my experience, this is not necessarily true. Christopher Reeve got more publicity than any other person with spinal cord injury. He was a household name but he still had work very hard to raise $10-$20 million per year. Funding does not always follow publicity.

                                On the other hand, to raise many millions or even billions of dollars, we must reach a much wider audience than we have to date. So, I hope that you will be a successful filmmaker soon and come back to help us do something to reach billions of people around the world.

                                Wise.

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