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  • #16
    Originally posted by Patrick Madsen View Post
    WTF! Why the condescending attitude?

    So you think a bad attitude from Spain is going to influence how any foundation is spending their money or influence them to answer any of your funding questions. As an earlier post say, Look it up, it's there with their 501.c exempt status. If you have questions they might be more apt to write a personal response knowing you are at least enlightened a little from reading it. Of course you get a form letter with all the inquiries they get a day.

    I think you are pissed off because you got injured and can't get fixed, not because you want to see others out of their w/c's. You need someone to blame, so you blame the foundations because they aren't going fast enough for you. Spend a few years in the chair, then you can get altruistic.

    You asked what I thought, that's what I think or is that too much for you.
    Why do you push your head deeper into the send instead of finding the courage to look at the reality?
    In God we trust; all others bring data. - Edwards Deming

    Comment


    • #17
      Paolo, did you move to Spain without telling me? I thought we were friends

      Im not sure how some people have taken this as an attack. A very polite but honest question was asked of the new CEO of RHF. A bog-standard reply was sent to all failing to answer the question. A second attempt has been sent to simplify the question further. I expect RHF to answer at some point within the next week. I look forward to it. But by no way is it an attack. Maybe there is something in the water.


      People are merely asking legitimate questions knowing that some board members of these organisations are equally disillusioned of the focus of curing spinal cord injury. If these questions help the organisations refocus then this is a very good exercise. If the organisation comes out and demonstrates that they are focused on curing spinal cord injury (which by the way is in their mission) then Im sure everyone will be happy. If not, well then everyone knows the truth. Simple.

      Dont forget, the SCI community is the consumer! And the consumer is always right!

      Comment


      • #18
        A polite honest question hopefully isn't viewed as an attack. I try to look up the funding on all orgs that I donate to. If 90% of their money is poured into fundraising or staff salaries etc...I like to know before I send them my money. I can look that up on a public site and get 501 c information. However, in other countries, it's not so readily available. In light of what happened with cancer donations in Canada...it's worth asking a question and trying to get an answer. Rick Hansen has done fine work over the years for SCI, but it's important to know where funding dollars go also for spinal cord injury in Canada.


        Cancer Society spends more on fundraising than research

        By Erica Johnson, CBC News

        Posted: Jul 6, 2011 5:00 AM ET

        Last Updated: Jul 6, 2011 8:28 AM ET

        Read 1070 comments1070 Back to accessibility links
        CBC's Marketplace discovered that each year, as the Cancer Society raised more dollars, the proportion of money it spent on research dropped dramatically. (Canadian Cancer Society/Canadian Press)


        P.O.V.: Will Canadian Cancer Society spending make you stop donating?IN DEPTH: What to look for when picking a charityDATABASE: Charities that pay external fundraisersIN DEPTH: Cancer, a disease without boundaries

        More fundraising than research3:37
        More fundraising than research3:37

        Beginning of Story Content

        An Ontario cancer researcher is concerned that the Canadian Cancer Society has proportionally shifted funding away from research and is spending more of its dollars on fundraising and administration costs.
        "Most scientists don’t realize that the budget has been going up and up, and donations have been growing, but the budget for research has been shrinking," said Brian Lichty, a researcher at McMaster University who is looking into treating cancer with viruses that kill tumours. "So they are surprised and disappointed when they find out that this is the case, and the trend."
        CBC's Marketplace analyzed the Canadian Cancer Society’s financial reports dating back a dozen years. It discovered that each year, as the society raised more dollars, the proportion of money it spent on research dropped dramatically — from 40.3 per cent in 2000 to under 22 per cent in 2011.
        The amount of money spent on research has increased slightly over the years, but as a portion of the Cancer Society’s growing budget, it's almost been cut in half.
        Lichty and some of his colleagues set up an information booth at this year's annual Relay for Life fundraiser in Ancaster, Ont., to raise awareness about the drop in funding for research at the Canadian Cancer Society. Over the years, his research team has received hundreds of thousands of dollars from the society, but he’s not afraid to criticize it now.
        "Cancer researchers are spending a lot of their time, or most of their time, trying to figure out how to get the money to fund their research, rather than actually doing research," Lichty said.
        "And it has become a much bigger portion of what our day-to-day activities amount to."
        Marketplace asked the Canadian Cancer Society for an on-camera interview, but it declined, instead responding by email:
        "While funding cancer research is a crucial part of the society’s work, we also have profound responsibilities to do everything we can to reduce the risk of Canadians ever developing cancer and to provide meaningful support to people living with cancer."
        But when Marketplace scrutinized the financial reports, it found that a greater percentage of funds was not being directed toward support, information and advocacy.
        Instead, the reports reveal that the area that’s getting the greatest portion of donor dollars is fundraising, up from 26 per cent of all monies raised in 2000, to 42.7 per cent in 2011.


        Will Canadian Cancer Society spending make you stop donating?
        Greg Thomson, a spokesman for the charity watchdog Charity Intelligence, said the Canadian Cancer Society appears to spend more on fundraising than a number of other charities.
        "I would want to understand better what they’re spending their money on, why they’re spending that much," Thomson said. "Because we found a number of very effective organizations that don’t need to spend nearly the percentages on fundraising and admin that we’ve seen."
        Competing interests

        Mark Blumberg, a lawyer who advises non-profits and charities but doesn’t represent the Canadian Cancer Society, said the society may be spending less on research because that money may have more impact elsewhere.
        "In the end, they need to listen to all the different interest groups and stakeholders that have an interest in the area, and not just prefer one and ignore others," Blumberg said. "I think what they are trying to do is spend money on different areas and balance stakeholders’ interests."
        Lichty said he’s hoping his criticism of the society will encourage the largest funder of cancer research in Canada to shift its priorities back to finding new treatments and a cure.
        "I suspect, if donors are not happy with the situation, if they want a greater proportion of their money to go to research — because that is why they donated their money — then maybe there will be a grassroots movement," Lichty said. "Some pressure from the donors and the volunteers to try and find a way to put more of the money they raise into research."
        http://www.cbc.ca/news/health/story/...y-funding.html
        Last edited by GRAMMY; 07-31-2011, 08:33 PM.
        http://spinalcordresearchandadvocacy.wordpress.com/

        Comment


        • #19
          Don't want to get into name slinging Pao. You do what you have to do.

          I've known Rick for 38 years, went thru rehab with him, had the same mentors, had a career in W/C sports and sci education with him. I was his demo. team captain for the world tour and still converse with him from time to time. Your saying that he is not interested in SCI cure is completely wrong and uncalled for. He is as interested as the next guy, probably more so. He knows that it takes dedication, money and co-operation to get further. His latest country tours have been basically getting Countries onboard to join in the research. He has made inroads, China for One, that was unthinkable not that long ago; I'm not sure if Italy has signed up. He has brought attention to National leaders and researchers personally for the need of SCI research.

          Rick also knows from experience and injuries he encountered, that care is dynamically important. He knows that the aging sci population must be in general good health to be able to withstand the rigors of rehabbing broken bodies whole again. What good is a cure, if everything else has worn out because of the stress it takes to live with an sci; so it's a double edged sword kind of.

          Rick is no saint by anymeans, he's doing what he believes in and it's not Rick. I'm sure others on this forum can attest to his going out and personally encouraging a new sci to stay strong and positve.

          I agree with you that research must be carried on. I do think I have my head in reality as knowing that Cure is still just a word. Reality is that we've been told a cure is just down the road, keep donating and it will come. We're closer to a cure. We have much better care and first aide responders to SCI incidents. Much better equipment and drugs to keep us going till it does come. So reality is, We've come a long, long way in a short time. Trustfully the cure will come soon enough to help you out. If not thank goodness for those who thought about the care part being important too cause we are all getting older.

          To my Canadian neighbors, I apologize about thinking you guys used the 501c. I knew you didn't lol.

          I am glad you are ethused about this; it's what keeps it going. But at the sametime, please don't belittle those who have done so much. The foundation just doesn't jump to Rick's will and whims. The Board of Directors probably have as great if not greater role in what goes on. I agre to go after the foundations for clarification, I objected to your portrayal of Rick as someone who didn't care about the cure reseach.

          I got you mixed up with Oxy from Spain, my apologies.
          Last edited by Patrick Madsen; 07-31-2011, 07:55 PM.

          Comment


          • #20
            Bravo Patrick Madsen.
            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


            • #21
              Patrick, of course paolocipolla's pissed off he's in a wheelchair! And of course he wants to get out of it............how many on here would be interested in sci if they or their children had not been injured in this way?

              I think these big organizatons will be hard to change with a few emails which is why I think something like the ChinaSCINet is our best hope - that is putting animal data into human trials as soon as possible - noone else is doing that.

              Comment


              • #22
                Originally posted by GRAMMY View Post
                In light of what happened with cancer donations in Canada...
                /forum/showpost.php?p=1401394&postcount=27
                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


                • #23
                  So, the bottom line is...I still would like to know what percentage of funding goes to researching for a cure at RHF...Hopefully someone on the Board of Directors could say what the percentage is if the new CEO Mr. Art Reitmayer doesn't know the number? Who knows...? Surely someone at RHF should have the figure.

                  Pat Madsen said earlier:
                  "Every Foundation is like this, why should the RHF be any different? They are all the same. It's why I don't donate to any of these foundations; it just goes to keep operating and paying the big bucks to the executives. Sounds like the prudent thing to do is to ask the questions before donating. The Board of Directors probably have as great if not greater role in what goes on. I agree to go after the foundations for clarification."

                  That pretty much sums up why I need to ask the question. I've written them previously and they send me "robo" responses. If someone could get them to divuldge an actual figure, I would be grateful.
                  Last edited by GRAMMY; 08-01-2011, 12:27 AM.
                  http://spinalcordresearchandadvocacy.wordpress.com/

                  Comment


                  • #24
                    Originally posted by GRAMMY View Post
                    So, the bottom line is...I still would like to know what percentage of funding goes to researching for a cure at RHF...Hopefully someone on the Board of Directors could say what the percentage is if the new CEO Mr. Art Reitmayer doesn't know the number? Who knows...? Surely someone at RHF should have the figure.

                    Pat Madsen said earlier:
                    "Every Foundation is like this, why should the RHF be any different? They are all the same. It's why I don't donate to any of these foundations; it just goes to keep operating and paying the big bucks to the executives. Sounds like the prudent thing to do is to ask the questions before donating. The Board of Directors probably have as great if not greater role in what goes on. I agree to go after the foundations for clarification."

                    That pretty much sums up why I need to ask the question. I've written them previously and they send me "robo" responses. If someone could get them to divuldge an actual figure, I would be grateful.
                    You hit the nail on its proverbial head!
                    Can someone just answer the question we sent so that we can decide what to do
                    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


                    • #25
                      Done.
                      "It's not the despair, I can handle the despair! It's the hope!" - John Cleese

                      Don't ask what clinical trials can do for you, ask what you can do for clinical trials. (Ox)
                      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


                      • #26
                        Originally posted by Patrick Madsen View Post
                        Don't want to get into name slinging Pao. You do what you have to do.

                        I've known Rick for 38 years, went thru rehab with him, had the same mentors, had a career in W/C sports and sci education with him. I was his demo. team captain for the world tour and still converse with him from time to time. Your saying that he is not interested in SCI cure is completely wrong and uncalled for. He is as interested as the next guy, probably more so. He knows that it takes dedication, money and co-operation to get further. His latest country tours have been basically getting Countries onboard to join in the research. He has made inroads, China for One, that was unthinkable not that long ago; I'm not sure if Italy has signed up. He has brought attention to National leaders and researchers personally for the need of SCI research.

                        Rick also knows from experience and injuries he encountered, that care is dynamically important. He knows that the aging sci population must be in general good health to be able to withstand the rigors of rehabbing broken bodies whole again. What good is a cure, if everything else has worn out because of the stress it takes to live with an sci; so it's a double edged sword kind of.

                        Rick is no saint by anymeans, he's doing what he believes in and it's not Rick. I'm sure others on this forum can attest to his going out and personally encouraging a new sci to stay strong and positve.

                        I agree with you that research must be carried on. I do think I have my head in reality as knowing that Cure is still just a word. Reality is that we've been told a cure is just down the road, keep donating and it will come. We're closer to a cure. We have much better care and first aide responders to SCI incidents. Much better equipment and drugs to keep us going till it does come. So reality is, We've come a long, long way in a short time. Trustfully the cure will come soon enough to help you out. If not thank goodness for those who thought about the care part being important too cause we are all getting older.

                        To my Canadian neighbors, I apologize about thinking you guys used the 501c. I knew you didn't lol.

                        I am glad you are ethused about this; it's what keeps it going. But at the sametime, please don't belittle those who have done so much. The foundation just doesn't jump to Rick's will and whims. The Board of Directors probably have as great if not greater role in what goes on. I agre to go after the foundations for clarification, I objected to your portrayal of Rick as someone who didn't care about the cure reseach.

                        I got you mixed up with Oxy from Spain, my apologies.
                        Good post!

                        If you keep this attitude we can do good things IMO.

                        About Rick I have said many times he has done great things etc..
                        I also think it is likely he can't have 100% control of all that is linked to his name. Sharks are everywhere there are $$.

                        Still he is in a position of power to influece significantly decisions I believe, that is why sometimes I say his name and not "people from RHF/RHI".

                        What I can't understand is why they don't simply say what % of their income goes for SCI cure research and what % goes for other things.

                        Last summer I asked the same question to CDRF on FB, see my comments in the link:

                        http://www.facebook.com/ReeveFoundat...26693817363257

                        Thay came up with numbers rather quicly. Not clear at all for me as they didn't answer my last question etc.., but still much better then the guys from RHF/RHI.

                        Then if you go on CDRF you can find a page where they (kind of) explain how their money are spent - this is specifically for the money spent in the area of research - (I am not happy at all with that either, but again RHF/RHI could at least try to be more transparent). See the link:

                        http://www.christopherreeve.org/site..._allocated.htm

                        If you have a chance to talk to Rick tell him I and many others including SCI professinals think his org can do much better to move things toward a cure.
                        So if he would like to talk about it (not necessarily with me) we can see what can be done. Believe me I am 99.9% sure there is much more RH orgs can do to make a cure happen.... all this without taking away care to SCI people who really need it.

                        If he dreamed with so much passion about a cure 25 years ago, shoudn't we believe even much more in a cure today that scientific evidence support the his/our dream?

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

                        Comment


                        • #27
                          Originally posted by GRAMMY;

                          [URL="http://www.cbc.ca/news/yourcommunity/2011/07/will-canadian-cancer-society-spending-make-you-stop-donating.html"
                          Will Canadian Cancer Society spending make you stop donating?[/URL]
                          Greg Thomson, a spokesman for the charity watchdog Charity Intelligence, said the Canadian Cancer Society appears to spend more on fundraising than a number of other charities.
                          "I would want to understand better what they’re spending their money on, why they’re spending that much," Thomson said. "Because we found a number of very effective organizations that don’t need to spend nearly the percentages on fundraising and admin that we’ve seen."
                          Competing interests

                          Mark Blumberg, a lawyer who advises non-profits and charities but doesn’t represent the Canadian Cancer Society, said the society may be spending less on research because that money may have more impact elsewhere.
                          "In the end, they need to listen to all the different interest groups and stakeholders that have an interest in the area, and not just prefer one and ignore others," Blumberg said. "I think what they are trying to do is spend money on different areas and balance stakeholders’ interests."
                          Lichty said he’s hoping his criticism of the society will encourage the largest funder of cancer research in Canada to shift its priorities back to finding new treatments and a cure.
                          "I suspect, if donors are not happy with the situation, if they want a greater proportion of their money to go to research — because that is why they donated their money — then maybe there will be a grassroots movement," Lichty said. "Some pressure from the donors and the volunteers to try and find a way to put more of the money they raise into research."
                          http://www.cbc.ca/news/health/story/...y-funding.html

                          Probably we should engage Greg Thomson from the charity watchdog...
                          In God we trust; all others bring data. - Edwards Deming

                          Comment


                          • #28
                            Originally posted by lynnifer View Post
                            Bravo Patrick Madsen.
                            Lynnifer,
                            I am thinking you could ask the question in a very polite manner with a personal email.
                            Since you have supported them actively for many years they should give you the answer.. then you may let us know it & prove that my attitude is totally non productive.

                            What do you think?

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

                            Comment


                            • #29
                              No, I will not be manipulated into what someone else wants me to do.
                              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


                              • #30
                                You're not curious about the answer?

                                Comment

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