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    #76
    OK then, I hope you are right but i stand by my original point, still
    "That's not smog! It's SMUG!! " - randy marsh, southpark

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      #77
      I get it you don't have time to hit them all but I still don't see a specific reason why you're targeting RHI specifically all the time. How many european organizations have you asked the same questions of and what was there answer.

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        #78
        Originally posted by canuck View Post
        I get it you don't have time to hit them all but I still don't see a specific reason why you're targeting RHI specifically all the time. How many european organizations have you asked the same questions of and what was there answer.
        I agree. We need to ask all. One at a time.
        I think though that the organizations that we can ask this to is limited, but when any group raises money for Cure but are also involved in other useful activities, like Rick Hansen Foundation, we need to ask clearly how much goes where and for what?

        I can think of this question being asked to CDRF. Can people think of others that we should also be asking.
        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

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          #79
          Originally posted by canuck View Post
          I get it you don't have time to hit them all but I still don't see a specific reason why you're targeting RHI specifically all the time. How many european organizations have you asked the same questions of and what was there answer.
          OK, I see you didn't read my posts with attention.

          Did you see that I have questioned CDRF more than a year ago and they come up with numbers in a few days? Since I don't think they are transparent enough I plan to question them again soon.

          About european foundation I have questioned a few, other I will.

          Wings For life & Spinal Research give 100% to SCI research to cure SCI and you can see on their site what research project they have funded.

          So far no one is as difensive as RHF. Common sense would suggest they have something to hide.... but common sense is not very common you know.

          Did you ask the question to RHF new CEO?

          If they were saying that are spending money for quality of life program but you would see thay are actually spending all the income just on SCI research would you be happy with it or you would question what they are doing.

          I think 50% care and 50% cure would be reasonable, don't you think?

          But from what I understand they spend 100% on quality of life. If that is not correct they should just answer the question.

          Does that make any sense to you?
          Last edited by paolocipolla; 3 Aug 2011, 5:06 AM.
          In God we trust; all others bring data. - Edwards Deming

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            #80
            Maybe we should simply back the people we know are supporting cure research. It's unlikely that we can change the current strategy of the Rick Hansen organizations - I think some of these institutions actually see an advantage with keeping us in our chairs so we are not likely to get much sympathy for a cure.

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              #81
              Originally posted by paolocipolla View Post
              About european foundation I have questioned a few, other I will.
              Paolo friend. The moment you and you’re Roman Italian weapons dragons challenges me, you first has to win a paraplegic arm wrestle. Okay?

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                #82
                Originally posted by Christopher Paddon View Post
                Maybe we should simply back the people we know are supporting cure research. It's unlikely that we can change the current strategy of the Rick Hansen organizations - I think some of these institutions actually see an advantage with keeping us in our chairs so we are not likely to get much sympathy for a cure.
                Christopher,

                I agree that the priority number one is to back the people that are supporting the cure research, that is what I try to do every day first, but by doing that I find often on my way orgs that keep selling the immage of the "happy roller". That is a big problem.

                For example I had the chance to talk to several politician who have been kind enough to listen to what I had to say about finding a cure for SCI.

                NO ONE of them had an idea of what living with SCI is really about. All they know are the good things that people in W/C can do, especially sports, because that is the image our orgs keep selling more and more.

                I have been told that the money I was asking for were not really a problem for the government.
                The problem is that they direct money toward things they feel the pressure for.
                This is not the case for SCI cure in most of the cases.

                Then the case of Rick Hansen is particularly crazy.

                First he rolled around the world for the "dream of a cure" and so he created pressure/sense of urgency to make a cure happen and people and politician have supported his org to make the dream come true. Politician seem to support anything he saies now.
                So now he talks maily about accessibility and inclusive society, so that is what he is putting pressure on.
                At the same time many people (and the mission of his org) still stick to the original dream he had, THE CURE, but his org seem not to invest money in SCI cure research.
                It's a mix of crazy things.. it seems a joke to me... and you know there are many people that agree with me but for "political" reasons they can't say what they really think.
                In my case I don't have anything to loose. If some canadians don't like me because I am trying to uncover a painfull truth.. frenkly I don't give a damn..

                Last thing, my national SCI org take him as an example for the accessibility ad an incluseve society he keeps talking about now and also show that he abandoned the DREAM OF A CURE as if that is what we all should do. So he is affecting also the priorities of my national org.
                That is another reason I feel I have the right to question what he saies and what he does.

                BTW I did't receave an answer yet...

                Conclusion a way to support research for a cure is also to address the obstacles created by SCI orgs.

                If we don't question what SCI orgs are doing we are fuxxed.

                Paolo
                Last edited by paolocipolla; 4 Aug 2011, 7:35 PM.
                In God we trust; all others bring data. - Edwards Deming

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                  #83
                  Originally posted by Leif View Post
                  Paolo friend. The moment you and you’re Roman Italian weapons dragons challenges me, you first has to win a paraplegic arm wrestle. Okay?
                  Don't you have water or coke to drink in Noway?
                  In God we trust; all others bring data. - Edwards Deming

                  Comment


                    #84
                    Without Rick, and those before him; your accessibility that you take for granted and the many jobs that are now accessible to us were non-existent. Not sure how accessible Italy is now, but 20 years ago, it was non-existent. That came about by people showing the gov't it was in their best interest to change. They sure didn't do it because it was the right thing to do, that's for sure.

                    Show me where Rick has said he didn't care about cure. Perhaps he expounds Care because that is something that can be done now and make an enormous difference for people with SCI's lives. Once you get a Nation interested, they will take the next step and see that cure is invauable for the Nations interest. China and India are prime examples of this.

                    He didn't go around the world in honor of a cure. He went around the world in honor of Terry Fox! We all recognized how important it was to persuade small communities to Nations that with minor changes, major advances can be made for its citizens. As talk of possible sci regeneration came about, it was added to the agenda. It took time to convince the money lenders and researchers themselves that it was a worthwhile cause.

                    Obviously, the Foundations are not answering your questions to your satisfaction. Do what Rick, Marc Buoconti(sp) Mike Utley, Chris Reeve and others did; they didn't get satisfaction with answers they were getting from the powers that be, so they created their own foundations with little or no idea of how to do it nor money to fund it. Rick was just a young, very poor man, with little more than a BA in Physical Education. If he can do it, you can also. Take your dream of what a foundation should be doing and do it; you can do it. You have a purpose in mind and a goal you want to reach. Go for it. It all starts with that first step, the rest will follow. Perhaps start by convincing Italy that it is in their best interest to fund research. The worst thing they will do is make money from the thousands flocking there if they come up with a solution.

                    It's been a good thread, but it's just rehashing over and over. We get the idea that cure is your prime goal. We, from the older generation made the world more accessible and inclusive for you younger generation to take it to the next step. You can do it, time for complaining is over, fix it.

                    God Bless and may you accomplish everything you dream happening.
                    Last edited by Patrick Madsen; 4 Aug 2011, 8:56 PM.

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                      #85
                      http://www.rickhanseninstitute.org/i...t2011_web1.pdf

                      http://icord.org/research/research-studies/

                      http://www.rickhanseninstitute.org/i...ls_31mar11.pdf

                      I"m really confused how can I as a person with only a high school education can I make the leap that work to make sci's progressively less disabling which they have become is a way towards working towards the cure? Sure it's not the pull the rabbit out of the hat instant soloution but it is progress. People that would have ended up in chairs 15-20-25 years ago are walking out of the hospital now. In my mind the new treatment modalities are restorative therapies.

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                        #86
                        Originally posted by canuck View Post
                        http://www.rickhanseninstitute.org/i...t2011_web1.pdf

                        http://icord.org/research/research-studies/

                        http://www.rickhanseninstitute.org/i...ls_31mar11.pdf

                        I"m really confused how can I as a person with only a high school education can I make the leap that work to make sci's progressively less disabling which they have become is a way towards working towards the cure? Sure it's not the pull the rabbit out of the hat instant soloution but it is progress. People that would have ended up in chairs 15-20-25 years ago are walking out of the hospital now. In my mind the new treatment modalities are restorative therapies.
                        I just finished reading the annual report. I derived the following answer:

                        RHF and ICORD spend 'none' of their funds on the regeneration of the CNS for chronic SCI.

                        The translational initiative focuses upon clinical best practises for acute and chronic care and rehabilitation rather than translation of lines of science for regenerating the CNS. The clinical trial network seems to be dedicated to acute 'neuroprotective' strategies.

                        Still no mention of figures though. Make of it what you will.

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                          #87
                          You read all of it that fast? Reading every page and only skimming the financials took me a good 15 minutes or more.

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                            #88
                            Originally posted by canuck View Post
                            You read all of it that fast? Reading every page and only skimming the financials took me a good 15 minutes or more.
                            I got the links earlier in my newsfeed

                            I guess Canadian not-for-profits dont/wont disclose the financials. Ho hum.

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                              #89
                              Originally posted by Fly_Pelican_Fly View Post
                              I got the links earlier in my newsfeed

                              I guess Canadian not-for-profits dont/wont disclose the financials. Ho hum.
                              Sorry, just skimming the financials now......which were in a separate document.

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                                #90
                                http://www.rickhanseninstitute.org/i...ls_31mar11.pdf

                                Interesting bits:

                                - Revenues up by over $10m CAD on 2010
                                - Grants up by almost $6m CAD on 2010
                                - Personnel costs (ie salaries) up by over $2m CAD on 2010
                                - Consultancy expenses up by ~$1.4m on 2010
                                - Short-term investments held increase by ~$8.5m on 2010
                                - Additional ~$4m carried forward in deferred contributions

                                Grants > $1m went to:

                                - UBC ($3m)
                                - Ontario Neurotrauma Foundation ($1.6m)
                                - Alberta Paraplegic Foundation ($1.6m)

                                However, there doesnt seem to any further breakdown on how those sums were spent. It would be nice if they could tie the figures up to the annual report which would make it an easier read.

                                In summary, considerably more funds, more grants awarded, huge increases in personnel costs and consultancy expenses and more money (in cash and other short-term investments) carried over on the balance sheet.

                                PS Im not an accountant so dont take my comments as gospel.

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