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Thread: Rick Hansen Foundation lobbying

  1. #1

    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; 10-17-2012 at 08:00 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. #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

  3. #3
    Senior Member lynnifer's Avatar
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    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

  4. #4
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    Quote 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

  5. #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

  6. #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.

  7. #7

    Wink

    Quote 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; 10-14-2012 at 08:50 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

  8. #8
    Quote 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.

  9. #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.

    Quote 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.

  10. #10
    Quote 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

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