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AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
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Another Contest Vivant - to WIN Reseach Money!!

Discussion in 'Action Alerts and Advocacy' started by SpecialK82, May 19, 2011.

  1. cfs info

    cfs info

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  2. SpecialK82

    SpecialK82 Senior Member

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    IACFS/ME was just 8 away from 20th position when I voted for them a couple hours ago. The competition is getting more serious now, and will probably get a little crazy here as Round 1 finishes.

    The Eastern region is hugely competitive pushing the CAA out 400 votes this morning! I really want the CAA to be in the running for the donations but I voted IACFS/ME because they are so close to making it. PANDORA, unfortunately, is still under 50th place.
     
  3. Sasha

    Sasha Fine, thank you

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    I think it makes sense to stick with the one nearest to making it (IACFS/ME, I guess) until they are safe (if they ever are) before turning to others.

    Strategy! It's horrible! I wish it was just a national, first-past-the-post thing with just one charity for us to support!
     
  4. frenchtulip

    frenchtulip Senior Member

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    IACFS/ME is now in 19th position!

    I have been amazed by the no. of votes for Prader-Willi and a sister illness, Angelman Syndrome. Last year Prader-Willi in Utah won the top prize, and Prader-Willi in CA was the Pacific regional winner. This year:
    Prader-Willi in Pacific Region--4th place--1,404
    Prader-Willi in Mountain Region--8,240
    Prader-Willi in Canada--1st place--1,523
    Angelman Syndrome in Central region--1st place--6,571
    9th place 543
    Prader-Willi is a rare syndrome that affects one in 16,000 to 25,000 in this country.
    Angelman Syndrome has been estimated to affect one in 10,000 to 20,000.

    I did not check other groups in the top 20 listings that may be connected with these two rare illnesses but do not have Prader-Willi or Angelman Syndrome in their names.

    But, boy, these two rare illnesses have amassed quite a number of votes--close to 18,500 votes (if I added correctly). All I can figure (assuming everything is legit) is that their supporters may have started voting in April and voted religiously every day.
     
  5. cfs info

    cfs info

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    It makes me wonder if it isn't time for some of these charities to merge into one strong National Organization with regional divisions. It would give us a stronger voice and more visibility and make voting in these charities much easier - no vote splitting.
     
  6. Sasha

    Sasha Fine, thank you

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    Excellent! I think we should keep voting for them for a while to make sure they don't get overtaken.

    Me too - first thing I did was look up its prevalence on Wikipedia and as you say, it's much, much rarer than ME yet they're racking up all those votes. They're the ones to watch for.
     
  7. Dolphin

    Dolphin Senior Member

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    One of the reasons I'm voting for the CAA is that this is to do with matching donations as I think the CAA would have a good chance of getting $2,500 in matching donations.

    But I don't see it the end of the world voting for the IACFS/ME as one can't be sure whether some might come up from the bottom. What I do think is a waste is voting for the WPI. They have 3213 votes now and 21st has 168. I think it is safe for people to not vote for them for a few days anyway - people can still keeping watching the other ones. I can't see 20 different groups from the region overtaking them before the end of June 11th.
     
  8. Dolphin

    Dolphin Senior Member

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  9. Sasha

    Sasha Fine, thank you

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    King-maker! I like it! With 10 voting days to go, any one of us could be that king-maker. All so very "Lord of the Rings"! I guess that makes us Frodo?
     
  10. caledonia

    caledonia

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    I voted for IACFS/ME today to give it a little more insurance.
     
  11. helen41

    helen41 Senior Member

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    those 2 votes came from my house. I emailed Nightingale as well to let them know the potential. I have no idea what kind of donations, if any, they get, but I figured they could just take over with the office staff and get in if they choose.

    I sent a second email to vivint, asking if we are allowed to use incentives to gather votes. no answer yet, but I do know other charities are doing so, and did so last year. I hope there will be a response.
     
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
     
  13. Dolphin

    Dolphin Senior Member

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    :thumbsup: Good ratio of posters on this thread with signatures promoting the contest :Sign Good Job:
     
  14. Dolphin

    Dolphin Senior Member

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    20th position in each of these regions in now, 22.5 hours ago and 47.5 hours ago (i.e. approx. 1 day and 2 days ago):

    Pacific: 137-153-188
    Whittemore Peterson Institute 2641-2966-3267

    Mountain: 223-225-268
    The Rocky Mountain CFS/ME & FM Association 223 (20th)-225-231

    Central: 227-253-309 (went up partly because of IACFS/ME - otherwise would be 279 - another jump of 26)
    IACFS/ME International Association for Chronic Fatigue 113-213-309

    Eastern: 518-628-820
    The CFIDS Association of America 413-444-479

    Canada: 3-5-6
    National ME/FM Action Network: 172-178-188
    Nightingale Research Foundation: N/A-N/A-2
     
  15. Francelle

    Francelle Senior Member

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    Just a heads up that the runner up in the Pacific Region to the WPI is getting closer each day or doesn't it matter in this round? Can't remember the guidelines about that - sorry and I'm too brain tired to check the rules! :confused:

    Also I have been unable to vote for more than one charity per day as I seem to be locked out once I vote for my choice in one region. Today I can't even vote for one so far but I will keep trying.
     
  16. Sasha

    Sasha Fine, thank you

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    Hi Francelle - as long as WPI is in the top 20 in its region by June 11 it's fine. There's no money to be won in Round 1 - it's just about qualifying for Round 2 (where all that matters is to be top!).
     
  17. Francelle

    Francelle Senior Member

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    Does that mean there will be one winner for each region in Round 2 or only one overall winner regardless of region?
     
  18. Sasha

    Sasha Fine, thank you

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    In round two each region's winner gets $100k and the overall winner $250k. Any charity who gets to round 2 can have public donations matched by Vivint up to a total of $2,500.
     
  19. Sasha

    Sasha Fine, thank you

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    By the way, there's a great article on CFS by Llewellyn King and I tried to leave a comment mentioning the Vivint contest with a link to Cort's article but the page is hanging for me. If anyone else could do that it would be great - there's only one comment up there now and I expect it's the earliest comments that get the most viewers.

    Here's the link to Cort's page: http://forums.phoenixrising.me/show...h-II-The-1.25-million-Vivint-Facebook-Contest

    Here's the article: http://www.realclearscience.com/art...fatigue_syndrome_is_misunderstood_106242.html

    I think every time a commentable ME article comes up on the web (on CFS central, Dr Jamie's blog, anything) we should be getting in there quick with a comment about Vivint. I think it's ideal recruitment ground.

    ETA: Here's what I tried to post - it's not hanging any more but keeps giving me an error message, argh: Please feel free to copy/ adapt. Just one or two mentions ought to do it, no need to hijack his thread.

    Thank you, Mr King, for your superb article. It really tells it like it is.

    We desperately need research funding and I urge anyone reading this to find out about the Vivint charitable giving contest, in which the Whittemore Peterson Institute is a strong contender to win $250,000 if enough people vote for it on Facebook.

    A big effort is being coordinated internationally to support the WPI in this and every vote will count. The main phase of the contest begins on 14 June and daily voting continues for 11 weeks. It's worth opening a Facebook account just for this purpose.

    No-one else is helping us - we must help ourselves! Please everyone, join in. Here's the link:

    http://forums.phoenixrising.me/cont...Round-II-1.25-million-Vivint-Facebook-Contest
     
  20. Sasha

    Sasha Fine, thank you

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    I've just followed my own advice and posted about Vivint on CFS Central. Mindy has a good post on there today: http://www.cfscentral.com/2011/06/steven-salzbergs-pseudoscience.html


    ETA: And Dr Jamie's blog, just done that. Here's her new post: http://treatingxmrv.blogspot.com/2011/06/motivation.html

    ETA #2: And Patient Advocate. Here he is: http://cfspatientadvocate.blogspot.com/
     

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