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    Rick Hansen Foundation lobbying

    www.bit.ly/standspeakcure

    The Rick Hansen Institute has hired some lobbyists to help them secure funding for the next five years (see attached article).
    A group of thirteen people from Canada, America, Italy, Netherlands, Sweden, the UK, Japan, and New Zealand have written to the lobbyists to explain our concern over RHF's lack of transparency in regards to spending and research on chronic spinal cord injury. We have asked to work together if we can get the answers and be satisfied that they are working for a cure for chronics.
    We have also stated that if we cannot get satisfactory answers that we will also lobby the same folks they are to make sure that all government funding for Hansen has an earmark for chronic cure.
    The problem is that the people who give the money don't understand what he's doing. They see 'a world without paralysis after spinal cord injury' and think he taking care of all of us.

    You can see the letter at www.bit.ly/standspeakcure

    Last edited by StemCells&AtomBombs; 17 Oct 2012, 8:00 AM. Reason: added the new campaign image
    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

    #2
    There was a little concern about the image I used in the above post.
    I'd love your help in deciding the image for this Rick Hansen Lobbying campaign.

    It takes 10 seconds to vote at www.bit.ly/voteimage

    Thanks for your help.
    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


      #3
      I can see why ... glad you put this to a vote or an image would have made me leave! Sorry - the feminist in me!

      Number 3!!!! (No pressure, people)
      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


        #4
        Originally posted by lynnifer View Post
        I can see why ... glad you put this to a vote or an image would have made me leave! Sorry - the feminist in me!

        Number 3!!!! (No pressure, people)
        Well, I guess you don't like the WOW effect, doesn't bother me

        Comment


          #5
          I really truly thought it was a dancer, not a stripper. I thought she looked strong. But letting people vote is much more inclusive, which is important.
          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


            #6
            I think the whole campaign is ill conceived. It is one thing to pressure RHF, it is another to attack their funding. You think governments have an "SCI Budget'" or something? That if they don't fund RHF the money will go to some other SCI related cause? No, it will go to breast cancer or building a park. At the end of the day RHF makes people aware about and helps people with SCI. Just because they apparently don't do this exactly how YOU think they should do it doesn't mean it is a great idea to screw with their attempts to get funding.

            In these economic times it is so hard to get funding, wouldn't it be great if the people who go that letter thought "wow people who are paralyzed don't even like this RHF group". and decided not to give them any funding? Man that would be great!

            Sigh.

            Comment


              #7
              Originally posted by t8burst View Post
              I think the whole campaign is ill conceived. It is one thing to pressure RHF, it is another to attack their funding. You think governments have an "SCI Budget'" or something? That if they don't fund RHF the money will go to some other SCI related cause? No, it will go to breast cancer or building a park. At the end of the day RHF makes people aware about and helps people with SCI. Just because they apparently don't do this exactly how YOU think they should do it doesn't mean it is a great idea to screw with their attempts to get funding.

              In these economic times it is so hard to get funding, wouldn't it be great if the people who go that letter thought "wow people who are paralyzed don't even like this RHF group". and decided not to give them any funding? Man that would be great!

              Sigh.
              So i guess you think that because they do good things they should be allowed not to tell the community what they spend on? Sounds like a good way to let any organization turn bad quickly.
              We're not talking about an org that get a couple of hundred thousand. They take in millions a year. By not being clear about what they are doing it allows government to think that they are funding a cure. If they are, then they should say so. If they're not, they should let other research institutes and foundations that are looking at a cure for chronics a level playing field to compete on.
              Furthermore, if they are not spending on chronic cure, they are spreading false hope in the community as there are a lot of paralyzed people out there now who support and donate based on RHF's 'cure' statements.
              I hope they are spending on chronic cure, but when they refuse to put out the numbers or commit to future research, it truly makes me doubt it.
              So. They should just be allowed to continue all of this just because they do other good things? Makes no sense to me, but if you'd like to explain why they should be allowed to continue, please let me know. Maybe you'll convince me.
              Last edited by StemCells&AtomBombs; 14 Oct 2012, 8:50 AM.
              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


                #8
                Originally posted by t8burst View Post
                I think the whole campaign is ill conceived. It is one thing to pressure RHF, it is another to attack their funding. You think governments have an "SCI Budget'" or something? That if they don't fund RHF the money will go to some other SCI related cause? No, it will go to breast cancer or building a park. At the end of the day RHF makes people aware about and helps people with SCI. Just because they apparently don't do this exactly how YOU think they should do it doesn't mean it is a great idea to screw with their attempts to get funding.

                In these economic times it is so hard to get funding, wouldn't it be great if the people who go that letter thought "wow people who are paralyzed don't even like this RHF group". and decided not to give them any funding? Man that would be great!

                Sigh.
                Really?
                Sigh.

                Comment


                  #9
                  It is not a zero sum game. If you said, if I shut down RHF those funds would go to clinical trials for chronic spinal cord injury, man sign me up! But it won't will it? If you shut down RHF, or decrease its funding, all you have done is decrease awareness of SCI. I wish you spent your considerable energy on raising money for clinical trials instead of attacking people who actually do good for our community.

                  Originally posted by StemCells&AtomBombs View Post
                  So i guess you think that because they do good things they should be allowed not to tell the community what they spend on? Sounds like a good way to let any organization turn bad quickly.
                  We're not talking about an org that get a couple of hundred thousand. They take in millions a year. By not being clear about what they are doing it allows government to think that they are funding a cure. If they are, then they should say so. If they're not, they should let other research institutes and foundations that are looking at a cure for chronics a level playing field to compete on.
                  Furthermore, if they are not spending on chronic cure, they are spreading false hope in the community as there are a lot of paralyzed people out there now who support and donate based on RHF's 'cure' statements.
                  I hope they are spending on chronic cure, but when they refuse to put out the numbers or commit to future research, it truly makes me doubt it.
                  So. They should just be allowed to continue all of this just because they do other good things? Makes no sense to me, but if you'd like to explain why they should be allowed to continue, please let me know. Maybe you'll convince me.

                  Comment


                    #10
                    Originally posted by t8burst View Post
                    It is not a zero sum game. If you said, if I shut down RHF those funds would go to clinical trials for chronic spinal cord injury, man sign me up! But it won't will it? If you shut down RHF, or decrease its funding, all you have done is decrease awareness of SCI. I wish you spent your considerable energy on raising money for clinical trials instead of attacking people who actually do good for our community.
                    But again all you say is that they're doing good so don't worry about what they're doing about chronic cure. Wow!

                    You say that it's not a zero sum game, but there are a lot of people who donate as individuals who believe they are donating to cure for those of us currently in chairs. There are also politicians who vote funding because they think that they're funding a cure.

                    So. If RHF is not supporting research for chronic cure shouldn't they make this clear and actually either start doing it, or use their good name to help other orgs get that money for chronic cure.

                    The best thing in the world would be for RHF to feel the pressure and start doing what they say they're doing, but you don't just leave them alone because they're doing positive things, in this case we try to free up funding that people are donating and voting for in the name of cure and try to get that money to orgs that are. In the end RHF will still get money for awareness. They'll still get money for inclusion. They just shouldn't get money for cure if they're not spending on it.
                    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


                      #11
                      Originally posted by t8burst View Post
                      I think the whole campaign is ill conceived. It is one thing to pressure RHF, it is another to attack their funding. You think governments have an "SCI Budget'" or something? That if they don't fund RHF the money will go to some other SCI related cause? No, it will go to breast cancer or building a park. At the end of the day RHF makes people aware about and helps people with SCI. Just because they apparently don't do this exactly how YOU think they should do it doesn't mean it is a great idea to screw with their attempts to get funding.

                      In these economic times it is so hard to get funding, wouldn't it be great if the people who go that letter thought "wow people who are paralyzed don't even like this RHF group". and decided not to give them any funding? Man that would be great!

                      Sigh.
                      I would suggest you take some time to dig youself into what RHF/RHI have been doing, including reading their financial reports etc..

                      Unfortunatly thay have done a lot of rewriting of the web sites and took away many times the world "CURE" since we started questioning.... (that means a lot I think) ..but they can't burn what has been written on newpapers & books for more than 25 years...

                      Again take some time and dig into it. I took years and cross checked facts before coming out.

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

                      Comment


                        #12
                        I was watching TV last night, I saw Sarah Mclachlan singing a sad song about puppies and kittens, Alicia Milano asking for 50 cents a day for starving children and the new Lockup show which was a little disappointing. I didn't see anything about SCI, and every time I see those kitten commercials it pisses me off that people care more about dogs and cats than people with SCI (and I love dogs, cats not so much). I am a T8 complete (very similar to your injure if I recall correctly) so I get it, I want a cure just as much as you. You say "we try to free up funding that people are donating and voting for in the name of cure and try to get that money to orgs that are." I must have missed that part of you letter.

                        The fact we even care about RHF and the meager amount of money they get compared to organizations like PETA or WWF or even breast cancer research is sad. We are like dogs fighting over scraps.

                        Here is my point restated then I will drop it. If we want to find a cure for chronic SCI we need more awareness about SCI in general, we are invisible. I don't, and wont, give money to RHF partly because of the issues you have uncovered. I also applaud your efforts to get them more cure focused. The problem I have with this letter is that if you are successful all you will have done is lessen the amount of money for SCI in general, you will not have gotten more money for chronic research. If your letter was more in the meme "hey giving money to SCI is great but you get more bang for your buck funding chronic focused groups such as U2FP or SCINet" and lobbying for something instead of simply being against RHF I wouldn't have responded to this thread.

                        Anyway man, I look at what you are doing kinda like I view RHF. I may not agree with exactly what you are doing but any effort towards SCI is good so more power to you and thanks for working so hard for our community.

                        Originally posted by StemCells&AtomBombs View Post
                        But again all you say is that they're doing good so don't worry about what they're doing about chronic cure. Wow!

                        You say that it's not a zero sum game, but there are a lot of people who donate as individuals who believe they are donating to cure for those of us currently in chairs. There are also politicians who vote funding because they think that they're funding a cure.

                        So. If RHF is not supporting research for chronic cure shouldn't they make this clear and actually either start doing it, or use their good name to help other orgs get that money for chronic cure.

                        The best thing in the world would be for RHF to feel the pressure and start doing what they say they're doing, but you don't just leave them alone because they're doing positive things, in this case we try to free up funding that people are donating and voting for in the name of cure and try to get that money to orgs that are. In the end RHF will still get money for awareness. They'll still get money for inclusion. They just shouldn't get money for cure if they're not spending on it.

                        Comment


                          #13
                          Originally posted by t8burst View Post
                          It is not a zero sum game. If you said, if I shut down RHF those funds would go to clinical trials for chronic spinal cord injury, man sign me up! But it won't will it? If you shut down RHF, or decrease its funding, all you have done is decrease awareness of SCI. I wish you spent your considerable energy on raising money for clinical trials instead of attacking people who actually do good for our community.
                          This is complete nonsense. Of course it is a zero sum game, unless you're talking about inflation, every dollar spent is a dollar transfered from one person to another. Every charity competes for these dollars.

                          I think your point, that RHF does good for the community, is well taken, and it is not something I disagree with. What I disagree with is their 'motto' is misleading and people who give money to it are being deceived. If people know that RHF is doing nothing to find a 'cure' for SCI and still want to donate, that is fair. If people donate to RHF hoping it will lead to a cure, that is not ok if in fact RHF is not organizing funds towards that effort.

                          Their lack of accountability to the simple and direct questions Denis has addressed towards them has obvious implications as to their good faith efforts towards finding a cure.

                          On first glance RHF seems very unaccountable and corrupt. If they can answer some simple questions I would be happy to endorse them and their efforts. I would be happy to endorse their efforts even if they are NOT looking for a cure, as long as they make that clear. As you say, they appear to do some good for the SCI community. Deceiving the community as to their goals and is however NOT OK.

                          Comment


                            #14
                            Originally posted by StemCells&AtomBombs View Post
                            www.bit.ly/standspeakcure

                            You can see the letter at [url]www.bit.ly/standspeakcure
                            I think what you're doing is worthwhile and thank you for taking the time, but I think that for the first communication with them it would be better to omit the threat. It puts a negative spin on it and may get them off-side at the onset.
                            "Wheelie Wanna Walk!"

                            Comment


                              #15
                              It is not nonsense, there is no fixed amount of money people are going to donate to SCI research. In fact the more people are aware of SCI the more money will get donated to both care and cure. Also, the Fed has a habit of just printing money occasionally. So 1 dollar sent to RHF is not 1 dollar taken away from cure. In fact 1 dollar to RHF may mean 2 dollars are donated to cure caused because of the increased awareness of SCI issues.

                              Originally posted by cripwalk View Post
                              This is complete nonsense. Of course it is a zero sum game, unless you're talking about inflation, every dollar spent is a dollar transfered from one person to another. Every charity competes for these dollars.

                              I think your point, that RHF does good for the community, is well taken, and it is not something I disagree with. What I disagree with is their 'motto' is misleading and people who give money to it are being deceived. If people know that RHF is doing nothing to find a 'cure' for SCI and still want to donate, that is fair. If people donate to RHF hoping it will lead to a cure, that is not ok if in fact RHF is not organizing funds towards that effort.

                              Their lack of accountability to the simple and direct questions Denis has addressed towards them has obvious implications as to their good faith efforts towards finding a cure.

                              On first glance RHF seems very unaccountable and corrupt. If they can answer some simple questions I would be happy to endorse them and their efforts. I would be happy to endorse their efforts even if they are NOT looking for a cure, as long as they make that clear. As you say, they appear to do some good for the SCI community. Deceiving the community as to their goals and is however NOT OK.

                              Comment

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