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The BIG CHASE: funding US ME/CFS non-profits

Discussion in 'Action Alerts and Advocacy' started by Frank, Dec 1, 2010.

  1. Dolphin

    Dolphin Senior Member

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    Thanks Frenchtulip.

    Here's one place that has various lists of international, national and local/state groups that could be useful (even if some of the info may be out of date):

  2. Dolphin

    Dolphin Senior Member

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  3. frenchtulip

    frenchtulip Senior Member

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    Great tutorial, Frank! And thanks for all your hard work!
  4. SpecialK82

    SpecialK82 Senior Member

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    Great ideas everybody, I wonder if we can keep a master list maybe as a sticky with all the organizations that have been contacted so that we don't duplicate.

    I think both WPI and CAA have a great chance of winning the 1st round but the 2nd looks like it will be much tougher seeing how fast some of the leaders are pulling away.

    (please correct me if I am wrong) but I think on round 2, we should only vote for WPI and CAA, so that we don't create competition for ourselves with the other charities (unless we can swap votes with a group?)

    And why for vote the CAA:
    Because regardless how you feel about the CAA, they fund seed money for new and upcoming researchers, Gordon Broderick for one example. These researchers study CFS and then use the results to create interest and attract much larger funding from the NIH. So the CAA may fund $100,000 seed money to a project, and theses results could then attract 2 million in NIH funding. I mean, look at the return on investment! And the best thing is we don't even have to contribute a dime of our own money. Imagine if the CAA wins $500,000 it could turn into millions from government research.

    Alan and Kathy Light continue to say that they are out of money - I would love CAA to provide $$ to continue their important research. (I believe the prior research was funded by CAA as well??)

    So by all means lets support WPI and CAA to win both rounds, and give us all the very best chance of getting well :victory:
  5. Sasha

    Sasha Fine, thank you

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    Yes, great stuff, Frank, and you have such a lovely voice! I've added a link to your tutorial to my "vote now" thread on the contest.
  6. shannah

    shannah Senior Member

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    The Lyme community is currently seeking votes in their next round of voting for lyme awareness. Much overlap with ME/CFS - some of us have a dual diagnosis or misdiagnosis. Some of the ME community on FB has been voting in this & the last round. Perhaps we can trade off with them. Calda, Canlyme, Lymenet.org some of the names connected but potential is huge as many active lyme groups. Voting only continues from now until early May.

    http://www.sponsafier.com/#/gallery/view/46869

    with more info here

    http://www.lymedisease.org/news/lyme_disease_views/toyotasponsifier.html
  7. Dolphin

    Dolphin Senior Member

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    It's probably not the end of the world if a group gets more than one message - it might remind them/prod them or alternatively it shouldn't take long for them to delete it.
  8. frenchtulip

    frenchtulip Senior Member

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    Tuha and I were dividing the list from www.mecfsforums.com. As far as I know, we both concentrated on countries outside the U.S. I sent emails to dozens of organizations on behalf of the WPI before I knew that the CAA was also in the contest. I have posted on a number of Facebook pages about both organizations. I think it's a good idea to do posts on Facebook, where members are already familiar with the fb setup. But lots of state and local organizations in this country are not on fb. So emails to those organizations may be a great idea--They usually have a way of emailing members. And some of those members probably are on fb.
  9. Dolphin

    Dolphin Senior Member

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  10. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Just posted on Craigslist in Charlotte, N.C. and Columbia, S.C. for volunteers to vote for WPI in the Chase Giving contest. Doesn't take long and it reaches a lot of people.
  11. muffin

    muffin Senior Member

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    USA!
  12. Dolphin

    Dolphin Senior Member

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    Good but ideally I think it's better to contact ME/CFS and related individuals as many people in the general population can have their own pet charities (who may not even have been that interested up till now). When you write to people with ME/CFS hopefully it'll result in at least one more vote even if they also vote for something else.
  13. shannah

    shannah Senior Member

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    Is there resistance to approaching the various Lyme communities?
  14. Dolphin

    Dolphin Senior Member

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    Note from me anyway.
  15. SpecialK82

    SpecialK82 Senior Member

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    Contacting the Lyme Associations is a great idea - there is alot of overlap and they definitely have something to gain from CFS research.
  16. Dolphin

    Dolphin Senior Member

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    After writing to:
    - Facebook groups
    - "Real life" national and local/state/regional groups
    another source are
    - other online groups and forums.

    For example, if one searches www.yahoogroups.com, there are lots and lots. I've plugged it on a few. One can simply search a group's archives (for some one might have to join) and if there are no references, post the message.
  17. Doogle

    Doogle Senior Member

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    I found a contest vote exchange site. http://getonlinevotes.com/

    These are the instructions and how the vote exchange works.

    1) Fill out the form for your contest/competition links

    2) Vote for others on this site and leave comments on their post to let them know you voted for their cause and ask them to vote for yours

    3) Check your own post often for comments and return the favors
  18. Doogle

    Doogle Senior Member

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  19. Dolphin

    Dolphin Senior Member

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    Thanks for this.
    I'm thinking I might wait for a few more days. If it looks like the WPI are safely going to get in to the next round, I might use all or nearly all of mine for the CAA.
    ETA: Looking at it, I'm now wondering does it have enough traffic to delay.
  20. Doogle

    Doogle Senior Member

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    The contest exchange site http://getonlinevotes.com/ seems to be working pretty well. I have gotten a few unsolicited votes in just a few hours. I voted for their contest after they voted for WPI. I think it is most efficient if only one person works each exchange site because once the people are notified they can only vote once no matter how many times people vote for them.

    There are several exchange sites listed Ideas on How to Get Votes for Online Voting Contests. Maybe the strategy in the next round would be to have selected volunteers working every site.

    Would a few volunteers help me? One of the persons voting for WPI asked me to vote for her (Tiffany Sypk,Mildmay) at http://www.thebrokenheeldiaries.com/passporttoparis/votes/comment/629 You don't have to register but the instructions are unclear. You must click on the right most star under her picture to give here the best 5 star rating and I muffed it. There is no preview when you vote. If some people would follow the link and give her 5 stars I would appreciate it. Thanks.

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