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    Both are important Canuck, I think dodging the question is what is making people feel bad.
    If you can't handle me at my worst, then you sure as hell don't deserve me at my best.


    Sometimes it is easier to widen doors than it is to open minds.

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      I agree that they need to a better job on their public statements, and I think the answer today just shows the question probably had to go through some of the hiearchy before a "aproved" statement was made.

      That sort of thing happens in any organization especially government type organisations, In British Columbia the bureau of public affairs has to approve everything a government spokesperson says.

      Comment


        Originally posted by canuck View Post
        As mentioned in the faceboook link a new funding cycle is coming up.
        I think this is what we need to focus on now. The decision not to fund stem cell research seems to have been a very deliberate one. Assumedly, they have decided on behalf of the sci community that it's not a priority. So the question is, what's the best way to convince them otherwise without the whole thing getting unnecessarily antagonistic?

        Comment


          I think lobbying the government maybe the way to go, "we as taxpayers want the money you grant for sci related issued spent this way" After all it's the governments that are holding the big purse strings.

          Comment


            Originally posted by canuck View Post
            make a difference now instead of "well stem cells look like they might work, we are just going to clinical trials" What happens if nothing comes of the stem cell trials?
            That's what they supposedly entered the game for. To change the "well stem cells look like they might work, we are just going to clinical trials" for a "back in the days we funded a lot of trials with different therapies and we discovered a cure that works pretty well".

            That's why they exist in the first place (RHF, CDRF, WFL... so on). If they don't do it while pretending it in order to get funding, they are not part of the solution.

            If your greatest worry is "What happens if nothing comes of the stem cell trials?"... You should research on how science works, how treatments appear (yep, they don't magically appear)... and think about your question again.

            To me there's a more important question: "What happens if we don't try to find a cure?".

            Exactly, nothing happens and we stay the same.
            Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

            Fenexy: Proyecto Volver a Caminar

            http://www.fenexy.org (soon in english too)

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              Originally posted by canuck View Post
              I think lobbying the government maybe the way to go, "we as taxpayers want the money you grant for sci related issued spent this way" After all it's the governments that are holding the big purse strings.
              canuck has a very valid point. The wording on a lot of the government funding grants going to RHF in the first place specifically states "rehabilitation and care"...not that it couldn't be changed if folks did some lobbying for changes. The government grants need to be looked at very closely in how they are worded. RHF could help lobby the government for specific grants towards regeneration. If they accept gov funding for care, they have to abide by the grant funding intent and not deviate from that. That could all be discussed and clarified in a meeting with the RHF couldn't it? Just sayin...
              Last edited by GRAMMY; 16 Aug 2011, 4:03 AM.
              http://spinalcordresearchandadvocacy.wordpress.com/

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                Originally posted by canuck View Post
                They are doing translational research at the moment. http://www.facebook.com/home.php?#!/RickHansenInstitute

                I still don't understand why people can't seem to grasp that lessening disability via better treatment is part of the road to the cure. Personally if I was rolled into a SCI unit today I would rather have something that make a difference now instead of "well stem cells look like they might work, we are just going to clinical trials" What happens if nothing comes of the stem cell trials?

                As mentioned in the faceboook link a new funding cycle is coming up. At any rate, I'm done with the cure forum.
                ..but someone has to do the clinical trials for stem cells and other kind of therapies to find out if they work or not, don't you think?
                Why they are not supporting one single clinical trial about regenerating the spinal cord when they have the money and structures to support several clinical trials?

                Every country/ SCI org should do something to find a cure in relation to the structures and money thay have.
                In God we trust; all others bring data. - Edwards Deming

                Comment


                  Originally posted by canuck View Post
                  I think lobbying the government maybe the way to go, "we as taxpayers want the money you grant for sci related issued spent this way" After all it's the governments that are holding the big purse strings.
                  Good point, but who has the biggest power to lobby the government?

                  In Canada for sure Rick Hansen and his orgs.
                  If they lobby the government just for care the voice of people asking for some cure investment have less chance to be heard.
                  That is why we can't just ignore RH orgs and lobby for a cure ourselves.

                  This situation is common in many countries with their national SCI orgs, not just in Canada unfortunatly.
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    Originally posted by GRAMMY View Post
                    canuck has a very valid point. The wording on a lot of the government funding grants going to RHF in the first place specifically states "rehabilitation and care"...not that it couldn't be changed if folks did some lobbying for changes. The government grants need to be looked at very closely in how they are worded. RHF could help lobby the government for specific grants towards regeneration. If they accept gov funding for care, they have to abide by the grant funding intent and not deviate from that. That could all be discussed and clarified in a meeting with the RHF couldn't it? Just sayin...
                    Exactly!
                    In God we trust; all others bring data. - Edwards Deming

                    Comment


                      Is it August 24th the relay starts in Newfoundland?
                      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


                        http://icord.org/about/history/ Hmm in the history section in mentions that the Rick Hansen Foundation was involved in the start up of ICORD and provided some of the funding for the Blouson Center. The bottom of the annual report suggests there are still connections between the organizations. http://icord.org/files/2010/09/ICORDReport10-11web.pdf

                        Comment


                          ICORD's current research doesn't seem to be exactly at the cutting edge of cure if you read the subject matter

                          And look at that building! - you can see where a lot of the money goes

                          Comment


                            That report actually contains the first instance I've seen of ICORD being involved in stem cell research, but it's extremely vague as to what, if anything, they did with the cells in terms of a trial.

                            ICORD Principal Investigator Dr. Wolfram Tetzlaff and his research team are working with skin-derived stem cells since they are easy to harvest. Using research models, the cells are transplanted into the spinal cord injury site either at 7 days or 8 weeks after injury. By treating these skin-derived cells with specific factors before they are transplanted, they can be made into special ensheathing cells (called Schwann cells) which bridge the site of spinal cord injury, promote the regrowth of nerve fibers and produce insulation around nerve fibers. The latter allows nerve fibers to conduct an impulse, very much like plastic insulation around a cable.
                            The building is impressive. Lots of potential there.

                            Comment


                              Does anyone know if our ESC rules have changed? I don't think they have since their inception ... I believe they only have a 2-week window upon which to conduct research with ESC.

                              I'd have to look that one up again - it's been a while. We were in the middle - less relaxed than England but more relaxed than the US.
                              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


                                Originally posted by lynnifer View Post
                                Does anyone know if our ESC rules have changed? I don't think they have since their inception ... I believe they only have a 2-week window upon which to conduct research with ESC.

                                I'd have to look that one up again - it's been a while. We were in the middle - less relaxed than England but more relaxed than the US.
                                http://www.cihr-irsc.gc.ca/e/42071.html

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