1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Last Day Vote for Pandora and patient driven research

Discussion in 'Action Alerts and Advocacy' started by citybug, Jul 11, 2010.

  1. citybug

    citybug Senior Member

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    http://apps.facebook.com/chasecommu...rineimmu-disorders-org-for-resech-amp-adv-inc

    They are close to winning $20,000 sorely needed dollars, but their ranking is falling at last minute drive for votes.
    ends tomorrow July 12.

    Joining Facebook isn't that hard and you can get updates from WPI, PR and many groups.
    That's their link. Or go to Chase Giving in Facebook, click like, go to Chase giving app, search Patient Alliance, Vote top right.

    Allowing Causes just lets them use the facebook program, nothing else happens unless you choose to post your vote on your wall.

    Joining Facebook isn't that hard and you can get updates from WPI, PR, XMRV Global and many groups. People will send you music and funny videos.
     
  2. citybug

    citybug Senior Member

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    Gift Votes

    After you vote for 5 groups, you get a gift vote so someone can vote twice for Patient Alliance.
    the P.A.N.D.O.R.A. Facebook site is a good place to find a friend to give it to or ask for a gift vote.
    After 20 votes you get another to give away.
    In Chase Giving, click on Leaderboard, then My Votes to see how many you have left, or My Friends to see list of other CFS groups to vote for.
     
  3. Doogle

    Doogle Senior Member

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    PANDORA is slipping and needs more votes

    PANDORS is slipping badly, please vote and don't let $20,000 get away. Remember,"Participants will earn an extra vote ("Gift Vote") after casting five (5) votes and a second Gift Vote again when they cast all twenty (20) votes (excluding Gift Votes). Gift Votes may only be sent to and used by another Participant who may use them to vote for any Charity; provided a Participant may only vote for the same Charity no more than two (2) times." Thanks.
     
  4. Cort

    Cort Phoenix Rising Founder

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    The Time is Now For PANDORA

    PANDORA has been engaged in a month long contest on Facebook by Chase Community Giving. The top 200 charities will win $20,000 – an enormous amount of money for a CFS non-profit. As of 3 days ago PANDORA was at a solid 104th place. Now, with 21 hours to go, because of a last minute rush by other groups, PANDORA has sunk to 165th place. At this rate they will lose the contest on the last day and no CFS groups will take share in the winnings. PANDORA has big plans – including a Neuroendocrineimmune Treatment Center – that can benefit us all. They are a strong force for change in the ME/CFS Community. Let’s show that we as a Community can make this happen – that we can band together and support them and us and bring this home for one of the hardest working ME/CFS groups in the county. All it takes is voting on Facebook. You can find instructions how to do this here:

    http://www.forums.aboutmecfs.org/content.php?184-For-Non-Facebook-Users-Vote-for-PANDORA&nocache=1

    Check out Marly’s latest blog on PANDORA and the contest.

    http://agentforchange.blogspot.com/2010/07/chase-community-giving-1-day-left-to.html
     
  5. taniaaust1

    taniaaust1 Senior Member

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    i just checked a little while ago.. 18 hrs to go and they are at 165. Ive brought attention to PANDORA to a medical site i like to hang out in. Hopefully they will get a few more votes to keep there.
     
  6. Doogle

    Doogle Senior Member

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    I have a gift vote for someone to use on facebook for PANDORA, who can I gift it to to use the second vote? Got it thanks.
     
  7. Frank

    Frank Senior Member

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    The gap with the last one is maybe 20 votes, taking into account the causes that are not yet visible !
     
  8. shrewsbury

    shrewsbury member

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    2 gift votes available

    hi all - I spent the extra 10 minutes or so to use the extra non-ME/CFS votes (none in the top 400 of course) and now have 2 gift votes to give away.

    Please PM me with the name you used on Chase Community Giving so I can send you one.

    I'll edit this post once they're given away.

    sb/if:Retro smile:

    ETA: thanks to doogle FYI gift votes can only be transferred to people who are already friends on facebook.

    2 gift votes used
     
  9. Esther12

    Esther12 Senior Member

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    I've just added comments about PANDORA on a load of CFS facebook sites.

    It seems crazy that so much money is on the line for so few votes.
     
  10. Sasha

    Sasha Fine, thank you

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    Eeargh! Just joined Facebook (5 mins, folks) and tried to follow the instructions:

    Simple Steps (Thanks Frank)
    1)Log-on to your facebook account

    2)Click on this link and it will take you to the voting page for PANDORA: http://apps.facebook.com/chasecommun...ch-amp-adv-inc

    3)Click “Let's get started to vote” (green button) and give permission to the Chase application.

    4)Click vote

    But after clicking "get started to vote" no Chase app asked my permission and I don't appear to have any votes. Any suggestions?
     
  11. Esther12

    Esther12 Senior Member

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    Hi Sasha. We can always delete our accounts after!

    I think Chase is struggling with the ammount of traffic. Maybe try again in 5 mins?
     
  12. Lynn

    Lynn Senior Member

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    Yes you may have to reload several times. The site seems very busy.
     
  13. Sasha

    Sasha Fine, thank you

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    Hi Esther - yes, eargh, Facebook! Can't wait to leave and I've only been a member for five minutes.

    I pressed the wrong big green button (choice of two - didn't even see the right one the first time) and got the thing from Chase asking for permission which I granted. Then I pressed another green button. Then a Chase thing popped up insisting I tell it I liked it (so needy!). I clicked it. Then I pressed the big green button again. It took me for the tenth time to a page saying I had 0 credits (what?).

    Have I voted? Where am I? Nurse! Nurse!
     
  14. Lynn

    Lynn Senior Member

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    2:00 pm - PANDORA is barely hanging on - Could lose by as little as 20 votes

    I clicked on the bottom 20 ranked charities to see there actual numbers. Being the geek that I am I put it all in an excel spreadsheet.

    Although PANDORA has done well to day with 150 additional votes so far, 15 of the bottom 20 charities that were ranked 180 -200 this morning now have more votes than PANDORA. The average number of votes above PANDORA is 22.

    We need to get more votes. Please ask everyone that you know to go onto Facebook and vote.

    Thanks,

    Lynn
     
  15. Frank

    Frank Senior Member

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    the application is slow now, be patient, lot's of people on their You should have a green button VOTE NOW on top of the right side.
     
  16. shiso

    shiso Senior Member

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    Yes, the site is slow right now but you just need to hit "refresh" on your browser a couple of times to get to the pages you want to view.

    For those looking to give away/exchange/use gift votes, I just successfully gave away my second gift to a temporary new "friend" via the PANDORA Facebook page. It was all done through FB messaging (like PM here).

    For those willing to spread the word to their friends but need an email blurb to cut and paste explaining the background, here is something you can maybe use (please edit to your liking). I just asked some additional friends and friends who had voted if they wouldn't mind asking their spouses and close work friends during the day by forwarding the below email (this one doesn't get into the gift vote thing, but I figure the less work they have to do the more likely they'll cast one vote rather than zero):

    Hi everyone, I am forwarding the email below at my friend's request for those of you on FB. Any help would be much appreciated! Thanks, xxx

    Dear friends,

    I'm sending this to ask for your support on a cause that is important to me. I'm not sure how many of you know about the Chase Community Giving contest on FB. Basically, JP Morgan Chase will be donating approximately $5 million total to be shared among 200 non-profits that collect the most votes by FB users on its FB application by July 13. This time around, the contest is open only to local non-profits with small budgets. The top 5 will get $100K or more; the remaining 195 organizations will receive $20K each. Participants can vote for up to 20 organizations.

    For those of you already voting or are open to doing so, I'm sending this to ask for your support for research into my illness (unfortunately named) Chronic Fatigue Syndrome (also known as CFS, CFIDS, and ME), by casting a vote for a smart, ambitious but small non-profit that does advocacy and research for CFS, among other chronic illnesses.

    The name of the organization is P.A.N.D.O.R.A., which is short for "Patient Alliance for Neuroendocrine-immune Disorders Organization for Research and Advocacy, Inc.". Their CCG page has more info about their activities, including a video. It's the only CFS non-profit with a realistic chance of a top 200 result, but today is the last day of the competition with 7 hours left to vote, and while we've consistently been in the top 200, it now looks like we may not make the cut by as little as 20 votes on this last day of the competition: so every vote very literally counts! Earlier time-stamped votes will be given higher priority over later ones.

    It's very easy and quick to vote:

    1. Search for the "Chase Community Giving" application while logged into FB and allow access the application by clicking "Like".

    2. To vote for PANDORA, please Search using the words "Patient Alliance" and the full name will come up and hit "Vote Now" to cast your vote. That's it!

    Your voting activity will not appear anywhere on your FB wall/profile/status. If you'd prefer to keep your voting activity private within the CCG application, you can go to "Preferences" on the application page and select the last option, "Share none of my activity..." and others will not see that you voted.

    Thanks in advance! Finally, contest aside, thanks in general for all your friendship and support.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Keep trying to get in there- people are getting in and PANDORA is still in the top 200 but it has dropped to 186th.. We hung steady over the past day - lets get them back up there again. Now is the time when everything is decided!
     
  18. zoe.a.m.

    zoe.a.m. Senior Member

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    I haven't been able to get to the page for over an hour! Not sure what is going wrong. The link from the email sends me to a "nonexistent" address?!

    ETA: Think I finally did it, had to take another avenue. God, I hate FB.
     
  19. Lynn

    Lynn Senior Member

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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I voted already--is it possible for someone to send me a guest vote?

    Sushi
     

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