Page 6 of 10 FirstFirst 12345678910 LastLast
Results 51 to 60 of 91

Thread: Rick Hansen Foundation lobbying

  1. #51
    Sometimes it is hard to resist, but...

    "Don't argue with idiots because they will drag you down to their level and then beat you with experience" -
    Greg King

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

  2. #52
    Quote Originally Posted by paolocipolla View Post
    Sometimes it is hard to resist, but...

    "Don't argue with idiots because they will drag you down to their level and then beat you with experience" -
    Greg King

    Paolo
    Exactly who are the idiots Paolo? If this movement is not up for questions then it's not ready for prime time. I simply suggest that looking forward and impacting RHF's decisions before they are made has far more impact than questioning them once they've been made.

    This movement has caught some attention-- certainly within the Foundation. Phase 1 has been a success. They know who you are and that you can be a formidable voice. I believe it's now time to look forward instead of backward and make your demands more clearly known. You want transparency within the organization and you want more funds directed to chronic research. There are still a lot of questions. Who's going to decide which chronic projects are worthy of funding? We all know there are several projects we wouldn't personally give a penny, so how are those decisions being made?

    I do believe that by reframing your current campaign you can get a seat at the table. I don't know if that person could be Dennis or the more visible critics. But, that is nature of this strategy. "Bad cop" lobs grenades and scares the hell out of the organization and wakes them up (which you've done) "good cop" comes in and negotiates.

    To continue with the things you've been doing is going to allow them to control the narrative. Do not for one second thing you can out-spin their lobbyists or that lobbyists per se are bad. I would be worried if RHF was not lobbying for funds.

    But if your stated goal is not to burn them to the ground, and Dennis' reasoning there is sound, then the next step has to be figuring out how to get transparency and attention to chronics.

    Now you ask Canadians impacted to lobby for a representation of their voice within the organization. Should RHF refuse community input, there's an interesting narrative for the next battle.
    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.

  3. #53
    Quote Originally Posted by JenJen View Post
    Exactly who are the idiots Paolo? If this movement is not up for questions then it's not ready for prime time. I simply suggest that looking forward and impacting RHF's decisions before they are made has far more impact than questioning them once they've been made.

    This movement has caught some attention-- certainly within the Foundation. Phase 1 has been a success. They know who you are and that you can be a formidable voice. I believe it's now time to look forward instead of backward and make your demands more clearly known. You want transparency within the organization and you want more funds directed to chronic research. There are still a lot of questions. Who's going to decide which chronic projects are worthy of funding? We all know there are several projects we wouldn't personally give a penny, so how are those decisions being made?

    I do believe that by reframing your current campaign you can get a seat at the table. I don't know if that person could be Dennis or the more visible critics. But, that is nature of this strategy. "Bad cop" lobs grenades and scares the hell out of the organization and wakes them up (which you've done) "good cop" comes in and negotiates.

    To continue with the things you've been doing is going to allow them to control the narrative. Do not for one second thing you can out-spin their lobbyists or that lobbyists per se are bad. I would be worried if RHF was not lobbying for funds.

    But if your stated goal is not to burn them to the ground, and Dennis' reasoning there is sound, then the next step has to be figuring out how to get transparency and attention to chronics.

    Now you ask Canadians impacted to lobby for a representation of their voice within the organization. Should RHF refuse community input, there's an interesting narrative for the next battle.
    Jen,

    I am sorry you felt touched by my previous post. I actually read always your posts with deep attention as you always have good points.

    All that you have said about this campain makes perfect sense, it is well known and understood by the people involved in planning the campain. In fact these issues have been discussed since day one and all that has happened falled into the "possible effects to be expected" of the actions taken.
    I would say that the behavior of RHF/RHI has been rather predictable so far.
    Although some of the things that have been done might not have been the best possible things to do they have been always the result of a decision making process that has involved several people, sometimes I was part of it, sometimes not.

    I wish you would/could have joined the campain since day one as your contribution would have been very useful for sure.
    Now it is still very usefull IMO, so please keep posting your opinions, but it could be even more helpful if you would not assume things too quickly whitout first trying to learn in details what has been done so far and why.

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

  4. #54
    Senior Member
    Join Date
    Jun 2005
    Location
    Norway
    Posts
    17,427
    Quote Originally Posted by paolocipolla View Post
    Sometimes it is hard to resist, but...

    "Don't argue with idiots because they will drag you down to their level and then beat you with experience" -
    Greg King

    Paolo
    Says a person who can’t organize anything even at his own doorsteps.

  5. #55
    Senior Member
    Join Date
    Jun 2005
    Location
    Norway
    Posts
    17,427
    Quote Originally Posted by StemCells&AtomBombs View Post
    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.
    Listen. You don’t need a RHF/I organization for what you want. What you want is to start clinical trials, and to help basic research through translation research. Let me explain. In Canada you have a socialized healthcare system, sometimes called a universal healthcare system. This basically means that if you have a therapy to put through that system for testing like in clinical trials the government and the system will pay for it and facilitate it. You as an “organization” will not have to pay anything. So what do you need to be able to start clinical trials? Well you need a therapy to test, and scientist will help you with that. Then you need some clinicians and a few centers to agree with you and then you will need some health care authorities to create the infrastructure for your trial. You don’t need a RHF/I organization for any of that. For sure it would have been great if RHF/I could participate and help, but if they are reluctant why bother with them. Why not simply walk around and bypass them? Why spend so much energy confronting them? I saw an interesting documentary a few days ago about dr. Jonas Salk and the polio vaccine. One thing that got my attention was his ability – when he was working with boards etc. - to not confront opposition meanings, but his ability to work around the opposition, to have his way. Similar you can do with the RHF/I if you feel they are foot dragging. And like I wrote above, the only thing you need to get in a position to start this work is to create a little organization, and it is not a lot of work. Cripwalk and you seem to have missed my point. Sure you can bug RHF/I too, but why not also do something more constructive as well at the same time. I know that RHF/I in Canada more or less is a part of the healthcare system and like they are sitting there like and directorate on funding for further trickling down to other projects, but to change all this - my bet is – it will require more work to change all this then to do it yourself. Anyhow, there are a lot of SCI Canadians, and everything is sitting and waiting there in Canada, like great hospitals, good doctors, excellent scientists and so on, - so the only thing that seems missing is a lill organization to glue all this together. And a focused organization could have done all this. If I were a Canadian and living in Canada I would have created such an organization yesterday.

  6. #56
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    19,320
    I`m wondering how the Reeve Foundation hosts an event in Canada? Going despite the steep cost ... Lynn Weaver is a name I've seen tossed around research for a while.

    http://www.westernconnect.ca/site/Ca...41&view=Detail

    Amalgamation between these two big orgs is something that I'm interested in.

    Strength in numbers say cops ... true in everything.
    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

  7. #57
    Senior Member
    Join Date
    Jun 2005
    Location
    Norway
    Posts
    17,427
    So they are hosting a research and innovation dinner in Canada and giving a prize to a rehab-doctor at a university in the US? Haha crooks! If I where you I wouldn’t even let them over the border.

  8. #58
    Quote Originally Posted by Leif View Post
    Listen. You don’t need a RHF/I organization for what you want. What you want is to start clinical trials, and to help basic research through translation research. Let me explain. In Canada you have a socialized healthcare system, sometimes called a universal healthcare system. This basically means that if you have a therapy to put through that system for testing like in clinical trials the government and the system will pay for it and facilitate it. You as an “organization” will not have to pay anything. So what do you need to be able to start clinical trials? Well you need a therapy to test, and scientist will help you with that. Then you need some clinicians and a few centers to agree with you and then you will need some health care authorities to create the infrastructure for your trial. You don’t need a RHF/I organization for any of that. For sure it would have been great if RHF/I could participate and help, but if they are reluctant why bother with them. Why not simply walk around and bypass them? Why spend so much energy confronting them? I saw an interesting documentary a few days ago about dr. Jonas Salk and the polio vaccine. One thing that got my attention was his ability – when he was working with boards etc. - to not confront opposition meanings, but his ability to work around the opposition, to have his way. Similar you can do with the RHF/I if you feel they are foot dragging. And like I wrote above, the only thing you need to get in a position to start this work is to create a little organization, and it is not a lot of work. Cripwalk and you seem to have missed my point. Sure you can bug RHF/I too, but why not also do something more constructive as well at the same time. I know that RHF/I in Canada more or less is a part of the healthcare system and like they are sitting there like and directorate on funding for further trickling down to other projects, but to change all this - my bet is – it will require more work to change all this then to do it yourself. Anyhow, there are a lot of SCI Canadians, and everything is sitting and waiting there in Canada, like great hospitals, good doctors, excellent scientists and so on, - so the only thing that seems missing is a lill organization to glue all this together. And a focused organization could have done all this. If I were a Canadian and living in Canada I would have created such an organization yesterday.
    Leif, I will pose to you the same question I posed to Jen. Do you feel that organizing a non-profit group, raising millions of dollars, then directing it towards an appropriate researcher is the equivalent amount of work as writing a few letters?

    Also, do you recognize the inherent bureaucracy that occurs in every multi-million dollar decision making organization? The more money, the more heads, the more bureaucracy.

    I feel like we are living in two different realities here. It's not that I don't think making a brand new more efficient organization wouldn't be great - I'm with you there. It's that I think its much more feasible to put some pressure on an already existing organization to slightly tweak how it's operating.

  9. #59
    Senior Member
    Join Date
    Jun 2005
    Location
    Norway
    Posts
    17,427
    Quote Originally Posted by cripwalk View Post
    Leif, I will pose to you the same question I posed to Jen. Do you feel that organizing a non-profit group, raising millions of dollars, then directing it towards an appropriate researcher is the equivalent amount of work as writing a few letters?

    Also, do you recognize the inherent bureaucracy that occurs in every multi-million dollar decision making organization? The more money, the more heads, the more bureaucracy.

    I feel like we are living in two different realities here. It's not that I don't think making a brand new more efficient organization wouldn't be great - I'm with you there. It's that I think its much more feasible to put some pressure on an already existing organization to slightly tweak how it's operating.
    I think you continues to misunderstand what I am saying, but for your question. It is not a lot of work required to start an organization, which could be used as a tool for what you want. And you don’t have to have multi-millions, just enough money to keep you afloat to lobby, create connections and perhaps to create a meeting or two and some traveling, - that’s all you need. And it will not require a lot of bureaucracy, just a board, and few to write money applications for running the organization. Oh and make the organization a voluntary one, gives more credibility to be a grassroot org for the noble cause As for letter writing and speaking up, it has been done all over the world for years without much to shout hurray for, heck CR even spoke to the UN without any cure coming from that speech. All good in writing letters and speaking up, but to have what you want you perhaps need to do it yourself. Much better in the long run too, if you can build and org facilitating what you want and then build the cause brick by brick. All things take time, but to go after conservative others might take more vulnerable time - in the long run - then to build an effective org more suited for the cause. Anyway, good luck. And again, you can do both, create an org and pressure others.

  10. #60
    Quote Originally Posted by lynnifer View Post
    I`m wondering how the Reeve Foundation hosts an event in Canada? Going despite the steep cost ... Lynn Weaver is a name I've seen tossed around research for a while.

    http://www.westernconnect.ca/site/Ca...41&view=Detail

    Amalgamation between these two big orgs is something that I'm interested in.

    Strength in numbers say cops ... true in everything.
    Lynnifer,

    I might be wrong, but it smells as if the RHF has a deal with CDRF...

    I wouldn't be surprised if that is the case... and if that is the case I am not sure it is a good thing.

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

Similar Threads

  1. Rick Hansen Foundation campaign history
    By StemCells&AtomBombs in forum Cure
    Replies: 3
    Last Post: 07-01-2012, 01:48 PM
  2. New response from Rick Hansen Foundation
    By StemCells&AtomBombs in forum Cure
    Replies: 32
    Last Post: 06-06-2012, 11:06 PM
  3. Send a question to the new CEO of Rick Hansen Foundation
    By StemCells&AtomBombs in forum Cure
    Replies: 165
    Last Post: 09-28-2011, 12:25 AM
  4. Talks with Rick Hansen Foundation
    By StemCells&AtomBombs in forum Cure
    Replies: 75
    Last Post: 08-21-2011, 03:20 PM
  5. Second question to Rick Hansen Foundation
    By StemCells&AtomBombs in forum Cure
    Replies: 177
    Last Post: 08-21-2011, 12:55 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •