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!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

Discussion in 'Fundraising' started by Bob, Apr 4, 2014.

  1. Bob

    Bob

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    The Microbe Discovery Project
    www.microbediscovery.org

    This is the crowdfunding projects' website
    www.microbediscovery.org

    This is the facebook page
    https://www.facebook.com/microbediscovery

    And this is the Twitter account
    https://twitter.com/MicrobeProject
    Last edited: Apr 11, 2014
    jeffrez, Sasha, vli and 5 others like this.
  2. Bob

    Bob

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    Last edited: Apr 4, 2014
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  3. Bob

    Bob

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    Videos

    1. Dr Lipkin's appeal - English subtitles:
    www.youtube.com/watch?v=vzbwxpBKpnU

    2. Dr Lipkin's appeal - No subtitles:
    www.youtube.com/watch?v=blPb_zi8cPc


    Transcript of video:

  4. Bob

    Bob

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    Last edited: Apr 5, 2014
  5. Bob

    Bob

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    Today's crowdfunding total

    Friday April 4th 2014.

    $35,053
    Last edited: Apr 4, 2014
  6. Bob

    Bob

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  7. aimossy

    aimossy Senior Member

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    BOB! thankyou.:)
    Bob likes this.
  8. Battery Muncher

    Battery Muncher Senior Member

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    Thanks Bob. Great idea for a thread

    I remember checking the total on april 2nd (?) and it was something like $21,000. So we've gained ~$4-5,000 since then, plus that whopping $10,000 donation. Or $15,000 overall.
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  9. Bob

    Bob

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    Current crowdfunding total:

    $35,894
    SOC, aimossy and Nielk like this.
  10. Bob

    Bob

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    The video of Dr Lipkin's appeal for funds now has English subtitles.

    Dr Ian Lipkin: "I'm seeking your support to pursue a rigorous search for microbes that can trigger chronic fatigue syndrome"

    www.youtube.com/watch?v=vzbwxpBKpnU

    Last edited: Apr 9, 2014
    rosie26, aimossy, Sasha and 1 other person like this.
  11. geraldt52

    geraldt52

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    I know it’s early, and maybe it’s just me, but there seems to be a general lack of enthusiasm for this fundraising campaign that concerns me. It surprises me that there was so much enthusiasm in the recent fundraising for a documentary about CFS, and what seems so little enthusiasm for enlisting the help of what is arguably the most famous microbe hunter in the world to find the cause of CFS. I’m not a Facebook or Twitter person, but there appears to be little activity there. Even this thread is pretty quiet.

    We’ve had a couple of good documentaries about CFS dating back many years, with no impact as far as I could tell, but we’ve never had a scientist with the stature and visibility of Ian Lipkin take a genuine interest in our plight and say all the right things.

    Is there something wrong that I’m not aware of? Can it be corrected before we lose momentum? Is it possible that the money could be raised for the Rituxan trial and yet we’re going to fail to raise the money for the much deeper science? We seem to be off to a slow start.

    I’m particularly concerned because I’ve gone to a lot of effort to pool funds solicited from family and am close to being able to make what will eventually be a pretty significant contribution, at least for me, when a company match is completed.

    If we aren’t going to get the support for Lipkin that I expected, I’m beginning to wonder if the money wouldn’t be better donated to Montoya, Kogelnick, or the new Chronic Fatigue Syndrome Research Center at Stanford. It’s a big deal for me to get this together, and I hate not to spend it wisely.

    Thoughts?
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  12. Bob

    Bob

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  13. Esther12

    Esther12 Senior Member

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    We had the sort-of launch a while back, and then this new launch... I've not had a chance to look at the recent info, so despite being enthusiastic I haven't done much in the way of posting.

    Also, this sort of research is important but maybe difficult to understand, explain and rally around. It might take us (as a group of patients) a while to really get our heads around it all and find the right way of promoting it to one another. It's a great opportunity to have Lipkin involved, so I hope that we do pick up steam on this. Also, every little helps... but we could do with some richer patients!
    beaker, Valentijn, rosie26 and 2 others like this.
  14. biophile

    biophile Places I'd rather be.

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    There are probably a number of reasons for the apparent lack of interest compared to other campaigns. Maybe people are not convinced that the answer lays in this direction, or doubt that it will yield any immediate results. As far as I know, Kickstarter campaigns are only funded if the goal is reached, whereas in this campaign the money is charged regardless, so some people may feel it is a gamble or a potential black hole. Maybe everyone is tapped out or they have 'donation fatigue'. Some people for whatever reason may not trust Lipkin, or at least doubt that he deserves the money for this particular project.
  15. dancer

    dancer Senior Member

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    I find it frustrating that an announcement just came out about the MANY millions the NIH (if I remember correctly) was giving Lipkin et al for other infectious disease study.... yet for a study of ME/CFS, disabled un- or under-employed patients have to contribute their pocket change.

    Not a rational reason on my end, but it did make it harder to get excited about contributing. i DO think Lipkin's interest in ME/CFS is an awesome opportunity.
    beaker, Esther12 and vli like this.
  16. rosie26

    rosie26 Senior Member

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    I am trying to think of ways of raising money for Lipkins - we need to employ an expert fundraiser, someone who has experience. Ah, but we need the money to pay them.
    Last edited: Apr 11, 2014
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  17. geraldt52

    geraldt52

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    It would be helpful if people who have decided not to contribute would chime in and help us understand why...remembering that even a couple of dollars makes a statement. There are plenty of valid reasons why someone wouldn't want to contribute, and no one should feel that their decision is wrong, but maybe there's something that could be changed that would change their mind.

    It would also be helpful if we knew people's intentions. Are people working on things that will take awhile to complete? Are people opting for smaller contributions spread over a year instead of a larger amount up front? Are people waiting to see how successful it is before getting on board? Are people enthusiastic but just unable to contribute at this time?

    Am I just expecting too much too soon? I know a lot of people put a lot of work into the campaign and I sure hate to see it fail if there's something that can be done before people lose interest.
  18. Esther12

    Esther12 Senior Member

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    Possible things:

    -Do we know what will happen to the money if the full amount is not raised? When there's so far to go, that seems an important issue.

    -Related to that - the donation website is very much for Columbia rather than for ME/CFS. It feels a bit odd donating money to Columbia University from my tiny income when their website seems set up for rich people (their President was earning $1.7 million a year in 2008). I

    -I think that this is a better use of research funding than most ME/CFS projects... but it's not like it holds out a hope of imminent cure. The draw of unrealistic hopes which waste research funding can make sensible ideas like this one seem less exciting.

    It's a bit silly me commenting though, as I've not actually had a chance to read the campaign stuff yet, sp my views of the project are all from Simon's earlier article.
    vli likes this.
  19. Esther12

    Esther12 Senior Member

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    I was so right.

    From the FAQ:

    Sorry... There's no excuse for not donating now!
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  20. Forbin

    Forbin Forbin

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    It's possible that this is a bad time of year for some people (in the US at least) to donate. People are currently doing their income taxes, due April 15th, and may be uncertain of what they may have to pay for that. I'm not sure if this is nationwide, but, in California, some people also pay property taxes in two lump sums on December 10th and April 10th. Also, April 15th is the last day that you can contribute to an IRA (Individual Retirement Account) for the previous year. So, at this particular time, people may be unsure about how much they can afford to donate.

    [It's sometimes said that this is why US national elections are held as far away from this date as possible. :)]

    I think large charitable donations in the US tend to increase toward the end of the year because donors have a better idea of what their tax situation looks like by that time. I realize that this is a rather prosaic explanation when it comes to donating for a serious disease, but it may be a factor.
    Last edited: Apr 11, 2014
    vli likes this.

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