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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. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think the fact that we're competing against 'less worthy' causes like drum corps would bind us together with any other illness group regardless of research or other orientation.
  2. Hope123

    Hope123 Senior Member

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    I think we should band with the people that are close to the 100-drop-off as they are more desperate for votes and less likely to be a challenger in Round 2. Banding with top orgs only makes the competition closer.

    And for those who disparage drum corps:

    http://www.youtube.com/watch?v=YJVdnMAGIt8

    But really, it's hard to see us trounced by drum corps and a pack of wolves.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    There is definitely a Facebook rule that you have to use your real name and they are serious about it (unless they have changed this recently, but i doubt it). Lots of people do it, but if you're caught they can be harsh- closing down your main/real account for good.

    They are strict about weird things.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    good point. hadn't thought of that. Maybe Joyful Heart (domestic violence and sexual assault), Norfolk Botanical Gardens, Arcadia Educational Foundation (high ranking non-drum corp, non-pets orgs) plus illness orgs. Or then again, maybe we do need to focus only on lower down orgs because of the competition.

    fwiw- Jewish charities are another group that has probably been banding together.

    Edit: To make this more clear: if we can't figure out a way to monitor/enforce compliance (which would probably be very difficult) then I think we will have to ally only with lower ranking orgs. Who knows about game theory and how it would apply here?
  5. beesknees

    beesknees Senior Member

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    My guess to why the Drums Corps are doing very well is due to the fact that most of their voters are probably teens. Teens are on Facebook. They have all their teen friends plus their entire highschool to vote. They all probably have 50-200 friends on Facebook. Add in mom and dad, brothers and sisters. Not to mention people of all ages that used to be in the drum corps. That starts adding up. If I'm not mistaken some of them travel and perform at shows. So you add in fans.

    The number of voters for the wolves and wildlife center puzzle me a bit. I know there's animal lovers out there but it seems like a lot of votes. I'm sure the wildlife orgs have teamed up. The only thing I can think of is to point out the fact the most of animals the Wildlife Center protects like bunnies are enemies of wolves. So there vote is a vote for the enemy. :) I'm partially kidding. It's late my brains tired.
  6. beesknees

    beesknees Senior Member

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    Is Chase giving away more than 500,000 in round two? I just checked the site. It says FAN VOTES can help you win $500K. THE ADVISORY BOARD will grant an additional $500K!!!
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Looks like it!:
    So, we're talking about up to $1.4M for the two top orgs! Let's start organizing now! If you use chat, pls ask people to come over to this thread and participate in the discussion and/or 'sign up' as volunteers to do stuff. I suggest we drop all other advocacy efforts and get everyone to really focus on this until the contest is over.

    Are there one or more people who can volunteer to co-ordinate the efforts? Let's really get organized for maximum votes. I can help, but may not have the time to co-ordinate.

    Maybe we can have another thread, where the first post is updated often with info- lists of who is doing what and what needs to be done. I will start one when we get a little organized.

    We could get organized with a to do list and then send out a PR action alert, co-cure post, etc. asking people to check it out and sign up to do things.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    great points, beesknees!! I like the bunny angle! : )

    I think you're right about the fact that younger people are extremely important! They are on FB and have lots of friends and don't think twice about signing up for a new app (and letting the app see their 'personal info'). How can we get more young people involved? This could really be the key.

    Is there anyone who has contact with young people, such as teaching, coaching a team or leading a youth group?
    What facebook groups with young people could we target?
    I will contact the Healkick web forum for younger pwME.


    To clarify what I was talking about earlier:
    if we can't figure out a way to monitor/enforce compliance (which would probably be very difficult) then I think we will have to ally only with lower ranking orgs.

    Who knows about game theory and how it would apply here?


    fwiw- I oppose CAA, but I am supporting them in the Chase contest. Their current research slate is good and an extra few hundred thousand for ME research via CAA would be huge for us (even if some of it gets siphoned off for McCleary and Vernon's excessive salaries).
  9. Tuha

    Tuha Senior Member

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    I have one question about the rules. Will we keep the votes from the first round for the second round or all the organisations in second round will start from zero? I havent seen anything about this point in the rules.

    I already wrote it but i will repeat it because this thread is already big. My biggest strategie for the second round is to ask my facebook friends directly to vote. So it means during the week of the second round I will be all day long online on my facebook page - you can always see your facebook friends if they are online - if someone will be online I will ask him directly through facebook chat if he has 3 minutes time and if yes if he can vote. Like this you can help him or to talk to him if he needs some informations. The last year when we voted for PANDORA it worked really good for me- after facebook chat from my 50 facebook friends - 30 voted. noone refused just pity that i didnt find everyone online during the competition. At first I send an email to all my facebook friends and from 50 only 3 voted. When I asked them later during the chat why they didnt vote earlier - it was always like - we didnt have time, we forgot, we didnt understand,.....so i think direct asking through facebook chat work much better.
  10. Dolphin

    Dolphin Senior Member

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    A new thread sounds good as this long thread might put some people off. Maybe something with a heading like: "Help win over $1m for ME/CFS research - Round #2 Chase Community Giving preparations" (or whatever). I can't be a co-ordinator but will probably do stuff.
  11. Dolphin

    Dolphin Senior Member

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  12. Dolphin

    Dolphin Senior Member

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    Great.

    When I was looking up the CAA and the WPI on Guidestar, I noticed that JM has a big salary also.

    If it goes into the CAA's research program as a research-specific donation (don't know if will definitely happen here or not but often if a charity says a money is for research that is what would happen), it would only pay towards SV's salary.
  13. beesknees

    beesknees Senior Member

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    I think a new thread is a great idea! I'd like to see one just for brainstorming ideas for round two.
  14. Dolphin

    Dolphin Senior Member

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    Ok, I just set one up:
  15. Dolphin

    Dolphin Senior Member

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    I thought I'd post the final list as it might be a useful record (it will get deleted) and also some of the discussions about health groups just above are out-of-date as some didn't make it (and perhaps others did?):

  16. Dolphin

    Dolphin Senior Member

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    I realised something earlier which I thought I'd highlight:

    Charities only get one shot at round 2 - after the one, both the WPI and the CAA will never be eligible again*.

    So we need to make an all-out effort.


    *Indeed this time next year, there may be a contest for charities with turnovers of over $1m where there are no eligible ME/CFS charities.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Illness/ Medical Orgs

    Potential Allies:

    Other Illness/ Medical Orgs in the Contest (finalized list, place a end of Round 1):
    13. Dogs for the Deaf
    26. Intl Rhett Syndrome Foundation
    28. Nat Marfan F
    44. FANCONI ANEMIA RESEARCH FUND
    53. The National MPS Society
    65. FLORIDA'S VISION QUEST
    69. EPILEPSY FOUNDATION OF FLORIDA INC
    93. Infant Welfare Society of Chicago
    96. Treatment Action Group (AIDS)
    98. Cancer Care Services
  18. Dolphin

    Dolphin Senior Member

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    Flyer for meetings, etc. worldwide to help win $900,000 for ME/CFS Research

    I made up a flyer for the seats of a meeting this week. I thought I'd post it in case it might be of use to other people.

    I don't expect to win any design contests with it but if people don't have time to do anything fancier, hopefully it'll do the job. Feel free to adjust for your own purposes if you want, although it should work anywhere (hopefully).

    It can also be linked to at:
    http://bit.ly/mLgsxO
    or
    http://www.co-cure.org/Flyer_CCG_Round_2.pdf

    Here's the flyer attachment:
    View attachment Flyer_CCG_Round_2.pdf
  19. Dolphin

    Dolphin Senior Member

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    It would be great if people could write to lots of ME/CFS groups

    I spent quite a lot of hours last week preparing a flyer and then highlighting all over Facebook and some other mailing lists and a few websites. I have some other work to catch up on now (didn't get much work done today - was my nephew's first Holy Communion and there was a big family gathering here).

    I think it'd be good if people wrote to local/State/regional/national/international ME/CFS (and FMS/MCS/GWS) groups and I don't think this should necessarily wait till after the contest has started as groups may take a while to act (possibly 1/2/3 days) and not everyone will see it immediately. And then one wants to give people as much time as possible to rope in other people to vote - get one person with ME/CFS to vote and the first reaction for a lot of people will be to try to get other people they know (or perhaps don't know!) to vote.

    Just over 4 days to the start of voting which lasts 7 days.
  20. Dolphin

    Dolphin Senior Member

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    But I'm also talking about people contacting ME/CFS groups by E-mail - they may need to discuss it a little amongst themselves and then may have a weekly E-mail or whatever they may send out (which would likely lead to a delay) or even if they didn't delay for that reason, people may not read e-mails immediately, especially people with ME/CFS.

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