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Fundraising for Lipkin's Monster Study

Discussion in 'Fundraising' started by Cheesus, Aug 30, 2016.

  1. Cheesus

    Cheesus Senior Member

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    I've tasted freedom with today's metabolomics revelations, and now I need more.

    Microbe Discovery has recently written an article about fundraising. Beyond asking for small donations from patients and family - they really do count - they make a list of suggestions for fundraising:

    http://microbediscovery.org/2016/08/29/mecfs-monster-study-needs-5-million-how-do-we-get-there/

    So far the project has raised about $10,000. I do not know how long the fundraising has been going for - a few weeks at least. With a target of $5million, we seriously need to step up our game.

    I feel dwarfed and almost apathetic by the enormity of $5mill, but I reckon if we can get part way there then larger donors - public and private - will step in. The thing is to create noise and get noticed.

    So this is a call out to everyone to mobilise the troops. We need to hit well-known and widely-read CFS blogs. I am going to contact Cort and see what he thinks about finding a permanent and prominent place for it on the HealthRising homepage.

    I will get onto Reddit and post it up on the CFS homepage and see if I can get someone to sticky it.

    Does anyone know the feasibility of PR admins sending out a single mass fundraising email to everyone who has ever had an account here? There must be hundreds or maybe thousands of dormant accounts - is there anything in the privacy policy to stop us contacting them? @Sushi? @Kina? Who might be able to organise something like that?

    Does anyone else have any suggestions for how to kick up a fuss about this?
     
    actup, Tuha, Sean and 7 others like this.
  2. Tuha

    Tuha Senior Member

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    I think simply everyone has to do more effort. We need to make publicity for this important study and talk in our ME community to persuade the patient that to donate to ME research is important. Then they can ask their friends and family to do it. It always work that many small donations bring few big donations. The last week we got already 1 big donation of $100,000.

    I wrote it here already several times. $5million looks like a huge target but already in the past we were able to get already several millions for Lipkin´s team and OMF. I looked at the statistics from those campaigns and it was always that around 500 donors were able to bring around $2million. So if the patients will join this effort again we can get there
     
    rosie26, Bob, actup and 3 others like this.
  3. Cheesus

    Cheesus Senior Member

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    That is really fantastic news. I have been in touch with Cort and he is going to see what he can do to drum up some fresh support for the project. I have also been getting in touch with a few people with large Twitter followings to see if they can push the study. Hitting established news and information outlets seems to be a good way to easily hit a large number of people.
     
    Bob, Sidereal, actup and 2 others like this.
  4. Tuha

    Tuha Senior Member

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    to get more people involved is the most crucial. i try to make publicity on facebook always when there is a new article about the microbiome discovery project - I simply repost the article on around 15 ME facebook pages and I try to encourage the patients to donate if they comment. I think if we would gt 10 000 patients involved it could do a really big difference and we would be able to fund studies like this easily.
     
    actup, aimossy and Cheesus like this.
  5. JohnnyD

    JohnnyD Senior Member

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    I have been brain storming this with my sister and we are planning to start a small fund raising effort for CII. The idea is to hold dinners for people willing to kick in $50 ea.... call it "Dining for CII Dollars" - maybe we could find some webspace for us/others to post photos of dinner participants or the food served, with city, state and country.. as a way to encourage others to do the same. In addition to the usual links to Lipkins Microbiome project page, we'd like to include a link to Jen Brea's Ted Talk --- does anyone know when this will be released?

    Thanks!
     
    mango, rosie26, Bob and 4 others like this.
  6. aimossy

    aimossy Senior Member

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    This is such an excellent idea! It's so flexible too in how people can do it. I'll do a dining for CII Dollars!
     
    Last edited: Sep 18, 2016
    mango likes this.
  7. JohnnyD

    JohnnyD Senior Member

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    That's great aimossy! I'll submit the idea to #meaction and see if I can get a read on when Jen's Ted Talk will be.

    Thanks so much!
     
    aimossy and actup like this.
  8. Cheesus

    Cheesus Senior Member

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    That is an awesome idea! I will tell my parents and see what they think as it is something they might be able to do too.
     
    Bob and aimossy like this.
  9. Tuha

    Tuha Senior Member

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    I will join you with this idea :)
     
    mango, Bob and aimossy like this.
  10. Bob

    Bob

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    If people are having dinners to raise funds, it would be great if you could tell us when you had your dinner, how many people came, how much you raised, etc., and post pics of your food and/or guests here. It might be possible to post some details on the MDP blog as well, but that depends on various things such as if anyone is available to put the work into it.
     
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  11. Cheesus

    Cheesus Senior Member

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    That is a good idea, though it could be even better if we were to start a new thread about it as that would presumably attract more attention to it.

    @JohnnyD As this was your idea and you are ahead of the pack with it, would you care to do the honours? Please post a link to it here if you are up for it so people can easily navigate to the thread.
     
    Bob likes this.
  12. JohnnyD

    JohnnyD Senior Member

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    Yes, I'd be happy to do that. I did send an email to #meaction asking about Jen Breas Ted Talk -- as I think that will be a powerful part of the pitch prospective donors/dinner guests.

    @Bob What is the MDP blog? I'm blocking on the acronym.

    Thanks for the feedback!
     
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  13. aimossy

    aimossy Senior Member

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    Bob likes this.
  14. JohnnyD

    JohnnyD Senior Member

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    Aha, of course, thanks aimossy
     
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  15. AndyPR

    AndyPR Senior Member

    Comet, Cheesus and aimossy like this.
  16. Cheesus

    Cheesus Senior Member

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    @AndyPR

    It's amazing they've raised so much with so few donations. We need to do our best to increase that number. Clearly there is not enough awareness of this study or how important it is.
     
    AndyPR likes this.
  17. AndyPR

    AndyPR Senior Member

    Well, they've had one donation of $100,000, the other 188 donations make up the rest.
     
    Cheesus likes this.
  18. Tuha

    Tuha Senior Member

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    Check this new interesting opportunity how to raise money for this important study. Dont hesitate to join it. We can see that NIH is still not up to fund ME research.So it´s up to us to move this research - there is not another way.


    THE STAIR CHALLENGE! Raise awareness and funds for ME/CFS!

    "People are beginning to find ways to fundraise on the ground for Columbia CII. Our team were contacted about this new initiative that also endeavors to increase awareness of ME/CFS and get people outside our community involved. It could be just the sort of activity that many might be very keen to tackle…

    How many of us remember the days of being able to exercise – and miss it dearly!

    Millions of people at varying degrees of illness severity struggle to do physical things. Some people with ME/CFS barely have the strength to feed themselves or sit up in bed.

    So many struggle maintaining a sitting upright position for long, doing basic activities of daily living like showering, cooking, or going out to get groceries. This doesn’t take into account the cognitive difficulties and many other common symptoms. This new challenge, however, seeks to highlight a key problem with exertion and energy for people with ME/CFS, in a way that can also spark conversation about other difficulties so many with the illness face daily."

    Do you have family or friends that would be keen to take up the challenge for a good cause? Do you know a sports team or local society that would want to do this for fun?

    CHECK OUT THE CHALLENGE!
    http://microbediscovery.org/2016/10/03/the-stair-challenge-to-raise-awareness-and-funds-for-mecfs/
     
  19. JohnnyD

    JohnnyD Senior Member

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    Jennifer J, Comet, Esther12 and 2 others like this.
  20. AndyPR

    AndyPR Senior Member

    New blog from the Microbe Discovery Project, looking at the recent NIH RFAs, what they might mean for the Monster study and CII.
    http://microbediscovery.org/2017/02...l-this-mean-for-columbia-ciis-mecfs-research/

    Also donations total updated to $140,430. Donation link is http://bit.ly/DonateToDrLipkin if you have $10 (or more) to spare.
     
    mango, Valentijn, Comet and 1 other person like this.

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