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!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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The Lipkin Microbiome Crowdfunding Campaign Launches!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 27, 2014.

  1. Simon

    Simon

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    Thanks to all who have donated, and if you haven't yet, please do consider making a gift. Even a dollar helps.

    And if you happen to have the full $1.27million, please don't hold back.
     
  2. vli

    vli

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    Fantastic @Simon. :D

    As I said in Simon's original article, if every ME/CFS patient in the United States gave only $1, we would already have raised $1 million--the CDC estimates there are at least 1 million ME/CFS patients in the United States.
     
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  3. Cheesus

    Cheesus Senior Member

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    I've donated, my parents have each donated, I recruited a number of facebook friends to donate and two of them shared, and one person said they will raise cash for it with a half marathon he has coming up!

    It is frustrating we can't see the total. I'd like to see that ticking on upwards as it would act as something of a motivator.
     
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  4. vli

    vli

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    Thank you, @Cheesus, for recruiting so many people to donate (and please do thank your friend who's running a half marathon for us)!

    You have my word as campaign initiator that we are working as hard we can to get the fundraising total updated every day from Columbia. We're working hard to get a daily update, but this might not be possible because of administrative issues.

    As soon as this gets fixed I will inform you all :)
     
    Last edited: Mar 28, 2014
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  5. Sasha

    Sasha Fine, thank you

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    That's fantastic, Cheesus - I should also take my own advice and say I've donated and so have my family. :)

    Yup, I'm at one with you about the joy of seeing a concurrent total - we'll just have to imagine it for now! :cool:
     
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  6. SB_1108

    SB_1108

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    Just a few suggestions for the Microbe Discovery website - If there could be a small block of text under the "total raised" box to indicate how often the total is updated - that way those that go to the website would know why the counter didn't change when they made their donation. At least thats what I was thinking after I made mine and I had to look back at the comments here to figure out why.

    The other suggestion I have… I think one thing about the Blue Ribbon project and Canary in a Coal Mine that made it successful on Kickstarter was the compelling video on the front page. I think the interview with Dr. Lipkin is great but maybe we could contact Jennifer Brea or Ryan Prior about doing a bit of editing to better relay the urgency and significance of this work.

    Its so disheartening that those left with this condition have to find the funds to pay for research. Especially when there are so many of us that have been denied for government assistance/disability. I've had CFS for about 5 years and I am still waiting on my disability determination but I have donated - because I feel like I need to help myself! I hardly have any money in the bank but I do believe that Lipkin is on the right track.

    I just want to second Quilp's comment
    Last comment - I am so grateful to everyone at Phoenix Rising for everything they do - Most of my friends walked away from me when I became sick. Just being able to read posts from people going through the exact same thing as me makes a world of difference in my life!
     
  7. geraldt52

    geraldt52

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    Maybe everyone has already thought of this, but I'll put it out there just in case. Before donating, consider if you have a family member or good friend who works for a medium or large size company that might match their employees charitable contributions. This is a very common company policy, although many people are unaware of it.

    By giving your contribution to your family member/friend, and having them make the contribution instead, you could capture their company's match and effectively double your contribution. In addition, your family member/friend might benefit from a tax deduction for the contribution, whereas many of us living on disability would not. Who knows, if you broach the subject with your family member/friend maybe they'll be willing to contribute a bit on their own!

    There's nothing even remotely illegal or unsavory about this, it's just a way to maximum any contribution you're able to make by enlisting the help of family and friends. People often ask "but what can I do for you?"...well, this is something they can do for you that costs them little or nothing.
     
  8. Sasha

    Sasha Fine, thank you

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    That's interesting, @geraldt52 ! Do you mind if I ask which country that's in? I'm not familiar with it.
     
    vli likes this.
  9. geraldt52

    geraldt52

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    USA, although I knew of a British company operating in the US that had the same policy. As I said, many people are unaware even that their own company has such a policy...it's worth someone contacting human resources to be sure. Many companies have dollar limits and most require the charity to be "qualified", which I'm sure Columbia is.

    If you go through the donation process on the Columbia website there is actually a section that asks if your company does matching contributions. I think I remember they even have a list of companies that do, though I wouldn't rely on that list as being complete. I also think that if you check yes Columbia will contact the company and take it from there.
     
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  10. Sasha

    Sasha Fine, thank you

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    Thanks, @geraldt52 - yes, Columbia is a registered non-profit.

    I just went through the donation process and couldn't see the bit about matching contributions. Can you tell me which page it's on in their process? Sorry - I maybe be missing something obvious!
     
  11. Firestormm

    Firestormm Guest

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    I believe it talks about it after you have completed your personal information, Sasha.
     
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  12. Sasha

    Sasha Fine, thank you

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    I did that - I'm on p. 4, headed 'Review' - am I just not seeing it? :thumbdown:
     
  13. Firestormm

    Firestormm Guest

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    Must be after you have entered your payment details then - I can't afford any more this month or else I would work through it - but we had raised this matching of gifts option before I think. Be good to try and contact some of the employers in the US or at least make more donors aware - as Gerald said - that this is an option available to them.

    I don't suppose Gift Aid applies to UK donations - this being a US non-profit. But perhaps that's something else we can look into at some point.

    Funny the things that occur to one... :)
     
    Sasha likes this.
  14. Sasha

    Sasha Fine, thank you

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    Maybe that's it - I'll check this out. Thanks! :)
     
  15. Firestormm

    Firestormm Guest

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  16. geraldt52

    geraldt52

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    Sasha, let us know if you don't find it on the Columbia website. If someone now in the process of making a contribution doesn't chime in, I'll make a small contribution just to go back through the process myself...I remember it being there, but not much more.
     
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  17. Sasha

    Sasha Fine, thank you

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    Thanks Gerald - I'll shove some more money in the slot and pay attention this time! Thanks for bring this up. :thumbsup:
     
  18. Sasha

    Sasha Fine, thank you

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    Wow! Just wow!

    You can 'heart' this article via a FB or google thing - I don't know if that helps jack it up some list or something? Anyway, I just did it.

    You can also 'thumbs up' comments and I just did some. I also posted a comment with a link to CII's donations page and to the campaign website - it appears a bit weirdly on my screen so I'm not sure if it's visible on the comments list like everyone else's.

    The comments are listed in order of how many thumbs up they've got - that may just be coincidence - but I'd be grateful if people could like CII's own comment and mine to keep those links high up, if we can, as well as any others you like.

    Also, please post there that you've donated, if you have - set the norm and show people that this is a campaign they should be joining because it's going to succeed!
     
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  19. Sasha

    Sasha Fine, thank you

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    Argh, finally, my message is up! I had all sorts of trouble. Finally managed it on the fourth go by entering it using FB (a dummy account so please don't anyone start liking me or contacting me via it - I'm afraid that account gets 'total ignoral' from me!).

    The comments that appear first on that page are FB ones and to make a comment you have to be logged into your FB account and hit the little 'comment' thing. I tried three times to post via the 'add your response' thing further down and it never appeared. No idea what the issue is.

    Anyway, I'd be grateful if people could 'thumbs up' my message in case it helps get Columbia's donations page link and our website link up the page there.

    Thanks!
     
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  20. Sasha

    Sasha Fine, thank you

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    Can anyone actually see my comment on that Tuller article? I can see it and have even 'thumbs-upped' it myself but a couple of people have told me they can't see it.
     

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