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Thread: Rick Hansen Foundation lobbying

  1. #41
    Quote Originally Posted by canuck View Post
    What's so wrong with RHI/Icord/RHF wanting to focus on Acute SCI?
    Who said that they were focusing on acutes and we're against this?
    I hope that you are purposefully misunderstanding.

    We're asking what they've done for chronics and to ask for a commitment for the future in regards to chronics.

    But i guess those who disagree would rather make it a care Vs. Cure debate or an acute vs chronics debate. Anything that will take the eye off RHF and make us look like an angry mob.

    But mobs don't spend their time checking facts, sending polite letters and trying again. But after a while people do become more provocative. You can see a good part of the history at http://stemcellsandatombombs.blogspo...-dont.html?m=1
    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. #42
    Here is another post about some questions I sent to RHI, the answers I got this morning, and the blog I just posted about it. http://stemcellsandatombombs.blogspo...thing.html?m=1

    You'll notice that I didn't condemn care or acute research. I didn't condemn accessibility or inclusion.

    I didn't accuse them of corruption or impropriety.

    I did tell them that they're not answering the questions.

    Now that I've answered all the accusations that will be thrown at me, you can read the questions and answers below.
    //////////
    http://stemcellsandatombombs.blogspo...thing.html?m=1
    I'm starting to get the distinct feeling that the people at Rick Hansen Foundation and Institute don't want to answer questions from the public. Not even questions from their own constituents.
    I asked,
    1. What percentage of your budget went to research (basic or translational) for a cure for chronic spinal cord injury in 2009, 2010, and 2011?

    2. What research was done in regards to question one above?

    3. What are your future plans for both spending and research for a cure for chronic spinal cord injury in the near future.

    And they answered.
    ////////////
    Hi Dennis,

    Thanks for writingus again with your questions.

    We share your passion in accelerating progress towards a cure for paralysis after spinal cord injury, although we may not always agree on the meansto get there.

    We're a young organization (created in 2007) now enteringour next five-yearwork phase.
    We're currently wrapping up many of our olderprojects and about to embark on some exciting new initiatives in our three core areas: cure, care and collaboration.

    In the meantime, our FAQ page (http://www.rickhanseninstitute.org/w...aqs#percentage )providesa breakdown of projects by core area,ourwork in the cure sphere, someprogress, funding sourcesand where we're heading.

    Regards,
    The Rick Hansen Institute
    Rick Hansen Institute
    6th Floor, Blusson Spinal Cord Centre
    6400 - 818 W. 10th Avenue, Vancouver, BC V5Z 1M9
    t: 604-707-2100
    e: info@rickhanseninstitute.org
    www.rickhanseninstitute.org

    A world without paralysis after spinal cord injury.

    Follow us:
    facebook.com/RickHansenInstitute
    twitter.com/rhinstitute
    /////////////////

    Follow the whole conversation between me and the Rick Hansen Institute

    1. To Rick Hansen Institute: we don't need paper heroes - http://stemcellsandatombombs.blogspo...-need.html?m=1

    2. Pants on firs - http://stemcellsandatombombs.blogspo...-fire.html?m=1

    3. Copy and paste the answers. Thanks. - http://stemcellsandatombombs.blogspo...hanks.html?m=1
    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. #43
    Dennis, I'm all in favor of asking tough questions. But to what end? I applaud the effort and I know the intent is good.

    Just like different eyes saw your logo in widely different ways, you're now hearing how various individuals are reading this effort. These are people who care, who come here and read your intent and your thought process. The Canadian public isn't going to give it that much attention. They're going to hear through their own filters "corrupt" "inept" "should be torn down." Because they're busy and this doesn't effect them (until it does) and they have better things to do. You don't want to burn it all down. You want it changed, right? People are telling you that's not the message they're getting.

    There's a saying that the definition of insanity is doing the same thing over and over and expecting a different result. Perhaps, it's time to change your approach. Laying siege at the gates will not bring a resolution; it will cause RHF to stay in a defense mode. What do you want? Is it not more transparency and more funding/attention to chronic studies?

    I think what you really want is a seat at the table to help guide and shape where those dollars are going. You've gotten their attention but I would suspect that both sides are at a complete impasse. They feel they've supplied the appropriate information and this movement of course feels unanswered.

    I wonder if both sides are not stuck right here in the middle. What do you want? It's more than an answer to your questions. Is that not a interim step? Once you have the information, what are you going to do with it?

    You do labor negotiations. You know that sometimes the guy that bangs on the table and shakes his fist and stirs up the base is not the guy that seals the deal. Both roles are critical. It's the good cop/bad cop approach. I suspect that as soon as your correspondence comes it, it's handled like it's radioactive. You, Dennis, are now seen as a threat and your messaging is treated that way. But, you do have their attention.

    What's phase 2? How do you get the seat at the table and what are you going to do with it once you have it?
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  4. #44

    Exclamation

    Quote Originally Posted by JenJen View Post
    Dennis, I'm all in favor of asking tough questions. But to what end? I applaud the effort and I know the intent is good.

    Just like different eyes saw your logo in widely different ways, you're now hearing how various individuals are reading this effort. These are people who care, who come here and read your intent and your thought process. The Canadian public isn't going to give it that much attention. They're going to hear through their own filters "corrupt" "inept" "should be torn down." Because they're busy and this doesn't effect them (until it does) and they have better things to do. You don't want to burn it all down. You want it changed, right? People are telling you that's not the message they're getting.

    There's a saying that the definition of insanity is doing the same thing over and over and expecting a different result. Perhaps, it's time to change your approach. Laying siege at the gates will not bring a resolution; it will cause RHF to stay in a defense mode. What do you want? Is it not more transparency and more funding/attention to chronic studies?

    I think what you really want is a seat at the table to help guide and shape where those dollars are going. You've gotten their attention but I would suspect that both sides are at a complete impasse. They feel they've supplied the appropriate information and this movement of course feels unanswered.

    I wonder if both sides are not stuck right here in the middle. What do you want? It's more than an answer to your questions. Is that not a interim step? Once you have the information, what are you going to do with it?

    You do labor negotiations. You know that sometimes the guy that bangs on the table and shakes his fist and stirs up the base is not the guy that seals the deal. Both roles are critical. It's the good cop/bad cop approach. I suspect that as soon as your correspondence comes it, it's handled like it's radioactive. You, Dennis, are now seen as a threat and your messaging is treated that way. But, you do have their attention.

    What's phase 2? How do you get the seat at the table and what are you going to do with it once you have it?
    I hope you did read the letter to the lobbyists.
    Phase II is very simply to lobby the government for RHF funding with an earmark for cure funding (you'll notice from the original post that RHF have hired lobbyists for a five year plan).

    The RHI letter above was just an answer to a past email and was the first group that went to RHI. Since over 12 million goes to RHI from RHF for research, it was necessary to make sure that they weren't the ones doing the work that we want done. Fair is fair

    About the different eyes who object here, mostly they're same people who raise the exact same objections each time, so while I listen, I don't listen so much anymore, better the others who the information gets too.
    The difference is that that the objectors on this site don't grow in numbers,actually there are a lot less and some who used to say things are now on our side, but those signing the petitions do and also those offering their names to the original letters do.

    Insanity is doing the same thing over and over if you're at a standstill, but our side's growing. RHF has 25 years on me so i didn't imagine that in a year they'd cave in and offer the information and dedicate money to cure. We know we've had an impact inside and out from people in the know, so you don't stop at this point.

    As a negotiator you don't cut the deal just to stop a fight, you do it because you've felt you've won something worthwhile, we haven't yet and we're gaining strength. In a strike you have people losing money and may be afraid to be victimized, we don't suffer the same consequences, so there is no need to cut a deal until something substantial is won, and that's money earmarked for chronic research.

    There are those who I never thought would join us, join. There are those that i never thought would work together, work together. I've seen those who first told me to stop for unity's sake now take a public stance. So what would be the point in trying to deal when we know they won't let us sit down at the table anyhow. Takes more than one year to build a movement, we're in it for the longhaul.

    PS. About the image, I hope you can also see that others view it differently from you. The dancer/stripper ran neck and neck with the walker and the majority of votes for the dancer were women. I never did the math, but if I only took the women's votes, the dancer might have won. The very large difference in European vs N. American opinion was also quite high and seeing that it was only in English, well...
    Last edited by StemCells&AtomBombs; 10-19-2012 at 01:36 PM.
    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

  5. #45
    I'm not suggesting that you quit or surrender, only that it may be time to tell them what you really want ie those earmarks. Unless you're suggesting something nefarious, their annual report is a look backward...even if it indicates future projects, they are already committed. You want to be part of the decision making. You need a seat at the table. That's where I would be lobbying, for the future, not the past
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

  6. #46
    Quote Originally Posted by JenJen View Post
    I'm not suggesting that you quit or surrender, only that it may be time to tell them what you really want ie those earmarks. Unless you're suggesting something nefarious, their annual report is a look backward...even if it indicates future projects, they are already committed. You want to be part of the decision making. You need a seat at the table. That's where I would be lobbying, for the future, not the past
    They will not respond to a very easy and simple request to see the books on funding...why exactly would they respond to a much larger request for a seat on the board or some other position of power?

    I'm not trying to be condescending, I really want to hear your logic out, perhaps it will be useful.

  7. #47
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    Quote Originally Posted by cripwalk View Post
    They will not respond to a very easy and simple request to see the books on funding...why exactly would they respond to a much larger request for a seat on the board or some other position of power?

    I'm not trying to be condescending, I really want to hear your logic out, perhaps it will be useful.
    Actually. What you could have done was to coup the RHF, but since it is not a democratic organization also with quite special names and connections, that might be a too big of a job. On the other hand, since you now are so many from Canada wanting a serious organization working for SCI therapies why cant you simply create your own organization and then start to apply for grants and government money for activity building and so on? Seems like you have enough good peoples that can and wants to write all kinds of letters so why doesn’t you use these human resources in creating a powerful Canadian organization? It can be done, it is not so difficult. - Register a good name, create a board, delegate tasks, create a website, issue quarterly bulletins; apply for grants and money from sources from all over Canada. Connect with some serious SCI laboratories, a few SCI centers and some politicians, and then you are in business. Why circle around the goal as you now are doing instead of going directly at the target?
    Last edited by Leif; 10-20-2012 at 08:45 AM.

  8. #48
    Quote Originally Posted by Leif View Post
    Actually. What you could have done was to coup the RHF, but since it is not a democratic organization also with quite special names and connections, that might be a too big of a job. On the other hand, since you now are so many from Canada wanting a serious organization working for SCI therapies why cant you simply create your own organization and then start to apply for grants and government money for activity building and so on? Seems like you have enough good peoples that can and wants to write all kinds of letters so why doesn’t you use these human resources in creating a powerful Canadian organization? It can be done, it is not so difficult. - Register a good name, create a board, delegate tasks, create a website, issue quarterly bulletins; apply for grants and money from sources from all over Canada. Connect with some serious SCI laboratories, a few SCI centers and some politicians, and then you are in business. Why circle around the goal as you now are doing instead of going directly at the target?
    I think like this about a new foundation. It will take longer setting up, getting established, and then trying to get the money to do anything worthwhile, than to force an already established foundation with money (public money) to spend money on what they advertise they're spending on.
    Add this to the fact that when you approach gov't or private donors in Canada, their refrain is going to be that they already gave to Rick Hansen and 'a world without paralysis after spinal cord injury'. The difference with RHF and other orgs, in terms of public money, is usually the other orgs all get some money, but in Canada what has happened is that public funds have been basically privatised. The gov't gives to RHF and then they dole it out to others. So if you want money, you apply to RHF. This is basically what we're doing; making a loud application

    I truly believe we'll get more quicker by dealing with RHF. If I thought the other way was faster, I do it that way, because i have only one goal - more money for chronic research. I truly don't like bugging a guy who really has done a lot. Recently I'm doing a lot of research on other foundations, and what i have found is that except for a few big ones, the other ones don't bring in very much.

    So since i need money, I'll go where the money is.

    I'll say it again, because I do respect your opinions even if we don't always see eye to eye; if we could make more quicker with our own foundation, I'd go down that path. On the other hand, getting the small foundations to work together so they have more fire power, is also a worthwhile goal.
    Last edited by StemCells&AtomBombs; 10-20-2012 at 10:47 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

  9. #49
    Quote Originally Posted by JenJen View Post
    I'm not suggesting that you quit or surrender, only that it may be time to tell them what you really want ie those earmarks. Unless you're suggesting something nefarious, their annual report is a look backward...even if it indicates future projects, they are already committed. You want to be part of the decision making. You need a seat at the table. That's where I would be lobbying, for the future, not the past
    You'll notice that we have made the exact same demands that you are advocating. The letter to the lobbyists is at the top of this thread and says the same thing.
    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

  10. #50
    Quote Originally Posted by Leif View Post
    Actually. What you could have done was to coup the RHF, but since it is not a democratic organization also with quite special names and connections, that might be a too big of a job. On the other hand, since you now are so many from Canada wanting a serious organization working for SCI therapies why cant you simply create your own organization and then start to apply for grants and government money for activity building and so on? Seems like you have enough good peoples that can and wants to write all kinds of letters so why doesn’t you use these human resources in creating a powerful Canadian organization? It can be done, it is not so difficult. - Register a good name, create a board, delegate tasks, create a website, issue quarterly bulletins; apply for grants and money from sources from all over Canada. Connect with some serious SCI laboratories, a few SCI centers and some politicians, and then you are in business. Why circle around the goal as you now are doing instead of going directly at the target?
    Do you honestly believe that setting up a multi-million dollar charity organization from scratch is as simple, financially and manpower wise, as writing a few polite letters to an already massive organization that has the necessary infrastructure already in place?

    If you believe there is an approximate equal level of labour involved in both, there is not. That is why we don't 'simply' make a new organization.

    Let's at least start with the simple solution instead of immediately jumping to the complex one. Denis has answered above as well and I agree with everything he has said.

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