Announcement

Collapse
No announcement yet.

Send a question to the new CEO of Rick Hansen Foundation

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

    #31
    Originally posted by lynnifer View Post
    You want an organization to bug? Bug the Canadian Paraplegic Association - they spend zero dollars on anything cure related or research related and if I'm not mistaken, are somewhat funded (no idea how much) by government funds. The March of Dimes used to be funded 9 million per year in Ontario alone - for equipment or home modifications.
    Why would we "bug" two groups that don't have a cure for sci in their mandate about their lack of funding for cure? This would be unreasonable and make it look like we're attack care and quality of life (which we're not).

    The Canadian Paraplegic Association could lend it's support for cure because they are a member run body but only it's support at this time.

    RHF/RHI on the other hand have a cure very clearly displayed in their purpose, therefore I don't see a request for information about spending to be 'bugging' anyone. They raise money in OUR name by having Hansen travel all over the world, therefore the world SCI community has a very big stake in making sure that they are held accountable to 'a world without paralysis after spinal cord injury'.
    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


      #32
      This is all just a classic example of what most of these big foundations are about. Some where along the way they got lost and strayed from what they were originally founded for which was fix this injury and get the heck out of these chairs. Now they are about building big ivory towers as monuments to themselves, fancy fund raiser dinners, hobnobbing with celebs and making sure they make payroll.

      All of these foundations were founded by single individuals with a Vision/goal,Why can't it be done again?
      I think the best way to insure the future of translational research would be to start a foundation with like minded individuals to pursue an end result which is a cure.

      There seems to be plenty of research going on and most of that will probably never see the light of day in clinical trials let alone developed into an available treatment for the masses in any reasonable time frame.

      My thought for this new foundation would be to look at all the research that is being done, pick the most promising one, support it financially and push it across the finish line. My vote is for nerve grafting like DR. Jerry Silver is doing, seems to me like it would be the quickest to the clinic.

      We need to focus.....

      Comment


        #33
        Lynnifer says we need something concrete from researchers. Do you mean before organizations will contribute large sums of money to research? If so that's an interesting view. Usually we say if we give researchers enough money they will cure us but could it be that people with huge sums of money to contribute are saying we need something concrete first then the funds will flow?

        Comment


          #34
          Originally posted by rjames View Post
          This is all just a classic example of what most of these big foundations are about. Some where along the way they got lost and strayed from what they were originally founded for which was fix this injury and get the heck out of these chairs. Now they are about building big ivory towers as monuments to themselves, fancy fund raiser dinners, hobnobbing with celebs and making sure they make payroll.

          All of these foundations were founded by single individuals with a Vision/goal,Why can't it be done again?
          I think the best way to insure the future of translational research would be to start a foundation with like minded individuals to pursue an end result which is a cure.

          There seems to be plenty of research going on and most of that will probably never see the light of day in clinical trials let alone developed into an available treatment for the masses in any reasonable time frame.

          My thought for this new foundation would be to look at all the research that is being done, pick the most promising one, support it financially and push it across the finish line. My vote is for nerve grafting like DR. Jerry Silver is doing, seems to me like it would be the quickest to the clinic.

          We need to focus.....
          A very good point. Is the path of least resistance actually to by-pass these monoliths altogether? Maybe so. Food for thought.

          Comment


            #35
            Originally posted by Christopher Paddon View Post
            Lynnifer says we need something concrete from researchers. Do you mean before organizations will contribute large sums of money to research? If so that's an interesting view. Usually we say if we give researchers enough money they will cure us but could it be that people with huge sums of money to contribute are saying we need something concrete first then the funds will flow?
            Perfectly put Christopher! Donating to various organizations and researchers (Davies, Kerr, Young, CDRF, Hansen and probably others I've forgotten about) has not advanced me anywhere in 26 years (as of today). Not even close.

            The part I really feel bad about is encouraging my family and friends to donate as well with nothing to show for it in return.

            I feel like this is the same conversation over and over. I should also admit that I haven't donated anything since last year (and only donated once to each researcher) ... not planning on it either as I'm so disgusted.
            Last edited by lynnifer; 29 Jul 2011, 8:37 PM.
            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


              #36
              Originally posted by rjames View Post
              My vote is for nerve grafting like DR. Jerry Silver is doing, seems to me like it would be the quickest to the clinic.
              I am in complete agreement with you here.
              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


                #37
                Originally posted by Fly_Pelican_Fly View Post
                A very good point. Is the path of least resistance actually to by-pass these monoliths altogether? Maybe so. Food for thought.
                Indeed, and then one could send funding applications to RHF/I and CDRF for SCI cures…

                Comment


                  #38
                  Originally posted by Christopher Paddon View Post
                  Lynnifer says we need something concrete from researchers. Do you mean before organizations will contribute large sums of money to research? If so that's an interesting view. Usually we say if we give researchers enough money they will cure us but could it be that people with huge sums of money to contribute are saying we need something concrete first then the funds will flow?
                  If one wants good omelets one have to take care of both the hen and the egg...

                  Comment


                    #39
                    Rjames, isn't Wise Young with the ChinaSCINet doing what you suggest? He's established a network of hospitals that is going to test promising therapies in controlled clinical trials.

                    Surely this is our biggest hope for a timely outcome. I don't know if we need another foundation when there are already quite a few.

                    Why don't we contribute to the ChinaSCINet? If a positive result is a achieved with any of the therapies surely more financial backing will come from hospitals eager to adopt the new therapy. I am naiive enough to believe that some doctors and scientists really want to cure us even if the big foundations, which have lost their original purpose, don't.

                    Comment


                      #40
                      Originally posted by lynnifer View Post
                      Perfectly put Christopher! Donating to various organizations and researchers (Davies, Kerr, Young, CDRF, Hansen and probably others I've forgotten about) has not advanced me anywhere in 26 years (as of today). Not even close.

                      The part I really feel bad about is encouraging my family and friends to donate as well with nothing to show for it in return.

                      I feel like this is the same conversation over and over. I should also admit that I haven't donated anything since last year (and only donated once to each researcher) ... not planning on it either as I'm so disgusted.
                      I have made donations to research directly in the past too and this is not a bad way to go because you know exactly where your dollars are going, what research is being done and how much is going to overhead costs. I think these kind of donated dollars have helped but not enough. I want a quicker path to the finish line!!!!

                      I've only been around this injury for 6 years, it's actually my 22 year old son who is paralyzed, but in those 6 years i'm starting to see a pattern and I'm getting cynical about it. Most researchers (not all) are in the research business and I feel as long as they have funding to keep the lights on in their labs their good to go. I don't think many of they have the where with all to move a successful research project beyond the doors of their labs. The big foundations are too complacent in my opinion and they are good with pulling down their big salaries and letting you all roll around in your chairs.

                      If we want a change in how things are being done and want to see some relief for this injury in some reasonable time frame we have to take the bull by the horns and do it our selves.

                      And Lynnifer 26 years is just too long to have waited...

                      Comment


                        #41
                        I feel like it is a double whammy, so to speak, because I had convinced myself that a treatment of some kind would be available by the time I was 25! I think most of my family felt the same. Then it became 30. Here I am now facing 39 in the fall and it's too late (muscle fibres are connective tissue or fat, left foot would be useless as I have no ankle bone from pressure sores and bone density was like that of an 80yr old - five years ago!)

                        I just want to pee again and be able to hold it but it doesn't look like I'll have that either.

                        Regardless, the current system isn't working fast enough.
                        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


                          #42
                          Originally posted by Leif View Post
                          Indeed, and then one could send funding applications to RHF/I and CDRF for SCI cures…

                          Good one Leif....that's pretty funny and would be ironic at the same time

                          Comment


                            #43
                            Originally posted by Christopher Paddon View Post
                            Rjames, isn't Wise Young with the ChinaSCINet doing what you suggest? He's established a network of hospitals that is going to test promising therapies in controlled clinical trials.

                            Surely this is our biggest hope for a timely outcome. I don't know if we need another foundation when there are already quite a few.

                            Why don't we contribute to the ChinaSCINet? If a positive result is a achieved with any of the therapies surely more financial backing will come from hospitals eager to adopt the new therapy. I am naiive enough to believe that some doctors and scientists really want to cure us even if the big foundations, which have lost their original purpose, don't.
                            Christopher I applaud Dr. Young for what he has done. He is an example of what needs to be done, taking matter in his own hands....Developed the therapy, developed the clinic trial network and got the clinical trial started and didn't wait for anyone.

                            I don't know if his therapy is going to be the most timely or not, possibly....

                            What I am suggesting is to start a new foundation, possibly with chapters in several different countries where each chapter could hold fund raisers and when the foundation as a whole decides what research project to support each chapter could make a donation to that research project. I think the donations to a given research project could be incentive based, meaning a portion would be paid and when a specific milestone was reached another donation would be made to move the project forward.

                            Comment


                              #44
                              Are you really sure it's too late for you to walk Lynnifer? The bone density is that way because no weight is on your bones

                              Comment


                                #45
                                Lynnifer 39 is a long way from the 70 years you can reasonably expect. I know that doesn't sound like much, but it's true.

                                Comment

                                Working...
                                X