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Thread: How to influence (our) foundations?

  1. #1

    How to influence (our) foundations?

    Where to begin? Ideas?

    1. Facebook Comments
    2. Write letters (I've done this multiple times and I'm usually brushed aside)
    3.

  2. #2
    Senior Member lynnifer's Avatar
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    Facebook comments are easily deleted ... I'll call them the 'European mafia' (lol-only joking) but they and I found that out, all too easily on the Rick Hansen facebook page.

    Chain emails? Multiple letters? Petitions that lead into news stories that put the pressure on?
    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

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    Senior Member 0xSquidy's Avatar
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    Team up with more people, learn about marketing, know what you want to tell who, be creative.
    Ideas from within the box won't cut it, so screw the box.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

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    Senior Member lynnifer's Avatar
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    Yelp is only for the young - I only heard about it a couple of weeks ago.
    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

  6. #6
    That is an important question Chaz.

    About facebook I think it is very effective even if what Lynnifer saies is also true.

    In the case of Rick Hansen Institute, I was banned after several very provocative comments, but I got their attention and after I was banned several other people made more gentle criticism which had some impact, not sure it was really effective yet. We should probably think to continue putting pressure on them.
    On the Rick Hansen Athlete FB page I haven't been bunned yet even if I have been very critical there too. Probably they are more cool bloded there.

    Also the email campains promoted by stemcells&atomboms had some impact too as we got some responses.
    All that hasn't been enough probably to make them change direction, but with more determination I feel it is likely to have a significant impact.

    I also had an article published:

    http://njnnetwork.com/2011/09/whats-...en-foundation/

    I had some email from a few canadians that supported my criticism. That wwas a little effect that was added to the above.

    In general multiple approaches are needed, and possibly act in a coordinated manner with a long term plan.

    In the case of the CdRF foundation, they haven't banned me yet on FB even if in the past I have been very critical with them too. I actually could meet them in person with other CC members.
    The meeting hasn't been very friendly, but I believe we made a little progress.
    So far I have the impression they consider me a crazy guy who can't understand the good things they are doing, so I am not sure they have seriously considered our views yet, but there is a little more hope then with Rick Hansen orgs ... maybe..

    With the Miami Project i have just started approaching them and I got some feedback that gave me a little hope.
    Lately I have been busy so I couldn't work on the above actions.
    I would also suggest to wait a while until Dennis gets home from rehab (after his recent operation) so that we can coordiante actions with him.

    Perhaps single players actions can be useful to begin getting some attention before starting more serious actions.

    It is important to determine in advance what we ask for.
    In general we want to establish an open constructive dialogue, which usually they are resistent at, so some hard manner might get necessary.

    Here is an article with some very interesting inputs:

    http://www.reddit.com/r/technology/c...you_stop_sopa/

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

  7. #7
    Thanks for your thoughts guys. Let's wait for Dennis and then brainstorm a strategy to influence our foundations??

    I also agree that an open constructive dialogue would be optimal. It would be great if we could transparently raise our concerns with those (Directors) representing our affliction. I'm also very busy–but I think you're right that we need some harder actions or series of actions to wake up these dinosaurs. They continue to get paid while we sit.

    It was our community that helped get the CDRPA into law. Where's the follow-through?

    We should be able to ask questions without defensive responses. I'm still surprised why we can't create an open dialogue with Dr. Davies. I feel like there's some secret society of people who stand behind their researchers like football teams. But–maybe I'm alone in my thoughts.

  8. #8
    Good question Chaz, especially as the foundations seem to be losing all touch with the reality of sci.

    I'm not a big believer in online petitions, but for a while now I've been advocating for us to put together some sort of document that anyone could sign, simply stating their name, date of injury, and some statement to the effect that "for me, cure is the #1 goal and priority." With enough input, we'd have a document that could be sent to any/ all of the big organizations at some point when there's a broader plan.

    Are the petition websites the only venue for that kind of thing?

  9. #9
    Many charities can reach a saturation point whereby their strategy can be 'hamstrung' by legal and money people. Can these large organisations suddenly become lean, mean and focused again? I dont know. Many other fields are experiencing the same problem. Even buying yourself onto the ever-growing boards of these organisations is'nt sufficient to make a difference.

    Our SCI Orgs should be taking a leaf out of The Myelin Repair Foundation and The Michael J Fox Foundation's books. They are innovative, raise more money and have a much better reputation with their own community. They should be collaborating with groups like ARM, U2FP, FasterCures and PatientsLikeMe!

  10. #10
    Quote Originally Posted by Fly_Pelican_Fly View Post
    Many charities can reach a saturation point whereby their strategy can be 'hamstrung' by legal and money people. Can these large organisations suddenly become lean, mean and focused again? I dont know. Many other fields are experiencing the same problem. Even buying yourself onto the ever-growing boards of these organisations is'nt sufficient to make a difference.

    Our SCI Orgs should be taking a leaf out of The Myelin Repair Foundation and The Michael J Fox Foundation's books. They are innovative, raise more money and have a much better reputation with their own community. They should be collaborating with groups like ARM, U2FP, FasterCures and PatientsLikeMe!
    I agree. The Myelin Repair Foundation and The Michael J Fox Foundation are 5 star charities. They know their stuff and stay focused on the prize. The big SCI Orgs I know of only have one star ratings, and that's for a very good reason too. Their big boards and fancy websites haven't made a difference. They don't know the meaning of lean and mean.

    Last edited by GRAMMY; 12-20-2011 at 02:12 AM.

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