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Help me compile a list of research-funding ME/CFS charities in each country

Discussion in 'Fundraising' started by Sasha, Jun 20, 2015.

  1. Sasha

    Sasha Fine, thank you

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    I'd like to compile a list of ME/CFS charities that people can donate to that FUND OR DO BIOMEDICAL RESEARCH - only those, and NOT SUPPORT OR CAMPAIGNING CHARITIES (sorry for the shouting but you know how this can get! :cool:). Researchers who you can donate to via their universities also count.

    I'm also interested in biomedical research projects that are crowdfunding.

    Already on my list (which I'll update in this post as people tell me about charities) I've got:

    Crowdfunds & funds for specific projects

    UK Biobank
    UK Rituximab Trial (IiME)
    UK Gut Microbiota Project (IiME)
    END ME/CFS ‘Severely Ill, Big Data’ Project (US)
    EBV related ME/CFS research (Prof. Scheibenbogen via Lost Voices Stiftung (Germany)

    Research charities

    US
    CII at Columbia (Lipkin/Hornig)
    END ME/CFS
    Open Medicine Institute
    Solve ME/CFS
    Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative
    Nova at South Eastern University
    Mount Sinai ME/CFS Center

    UK
    Invest in ME
    ME Association (Ramsay Research Fund)
    ME Research UK
    Action for ME

    Ireland
    Irish ME/CFS Association
    Irish ME Trust

    France
    Association Française du Syndrome de Fatigue Chronique

    Belgium
    Wake-Up Call
    www.wakeupcallbeweging.be

    Germany
    Lost Voices Stiftung

    Norway
    ME-Forskning

    Sweden
    Riksföreningen för ME-patienter
    http://www.rme.nu/

    New Zealand
    ANZMES

    Canada
    Nightingale Research Foundation
    http://www.nightingale.ca/

    Australia
    National Centre for Neuroimmunology and Emerging Diseases
    http://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases

    Who else? Please enlighten my international pig-ignorance and remember - I want only CHARITIES THAT FUND OR DO RESEARCH, not those that just campaign for it or offer support to patients (important as those things are).

    If you can give me websites, even better.
     
    Last edited: Jun 30, 2015
  2. lycaena

    lycaena

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    Joh, Blue and Sasha like this.
  3. Sasha

    Sasha Fine, thank you

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    lycaena likes this.
  4. Sasha

    Sasha Fine, thank you

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    Lycaena, I don't read German and Google Translate isn't doing a very good job for me! Will it be clear to German readers how to donate specifically to the research project and not to LVS's general work?
     
  5. lycaena

    lycaena

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  6. Sasha

    Sasha Fine, thank you

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    SOC and lycaena like this.
  7. catly

    catly Senior Member

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    outside of NYC
    Are you also interested in private foundations that fund MECFS research? The Chronic Fatigue Initiative (CFI) funded by the Hutchinson Foundation comes to mind.
    http://cfinitiative.org
     
    aimossy and Sasha like this.
  8. Sasha

    Sasha Fine, thank you

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    Thanks, but I'm only interested in ones that people can donate to. :)

    I'll clarify that in my first post.
     
  9. aimossy

    aimossy Senior Member

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    ANZMES NZ funding Prof Tate sash. Im goneburger and off to bed. Not sure if that fits?
     
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  10. Effi

    Effi Senior Member

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    @Sasha There's an organisation in Belgium called 'Wake-Up Call'. People can donate to a fund called 'Stop CFS'. The money is used towards biomedical research, patient advocacy and awareness campaigns. I have no idea how the money is distributed between those three, so I'm not sure if it can be on your list?

    http://www.wakeupcallbeweging.be/wucb/word-donateur
     
    Last edited: Jun 21, 2015
  11. aimossy

    aimossy Senior Member

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    Stanford Chronic Fatigue initiative.
    Nancy Klimas Nova
    Julia Newton Newcastle not sure.
    Jared Younger?
     
  12. aimossy

    aimossy Senior Member

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    Canada groups?
    Rituximab Norway?
     
  13. Tom Kindlon

    Tom Kindlon Senior Member

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    The Irish ME/CFS Association - for Information, Support & Research (in Ireland) have raised over E250,000 for research.

    We've just applied for charitable status (it wasn't so important here up till now).

    ---

    The Irish ME Trust also financially support research.
     
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  14. Sasha

    Sasha Fine, thank you

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    Yep, they fund research and that's what I'm after. Thanks!
     
  15. Sasha

    Sasha Fine, thank you

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    Close but no banana on some of these - the CFI gives but doesn't accept donations (it's a private foundation); Julia Newton doesn't have any donations route that I can see; nor (surprisingly) does Jarred Younger; but Nova does, so I'm adding that on.

    Happy to be corrected on any of this if I've missed something, folks! Which is pretty easy to do. Some of these organisations aren't making it easy to see what they're up to!
     
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  16. Sasha

    Sasha Fine, thank you

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    I'm hoping some Canadians and Norwegians are going to help me out on that.

    @deleder2k, can you help me? About research crowdfunds or research charities in Norway?

    I've got a sudden mental blank about who lives in Canada... o_O
     
  17. Sasha

    Sasha Fine, thank you

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    I believe you, Tom, but I can't actually see on that site where anyone would donate! Is there some page I've overlooked?
     
  18. Bob

    Bob

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    Sasha, I'm not sure if the Stanford chronic fatigue initiative is the same as the chronic fatigue initiative associated with the Hutchins family foundation? I've been wondering about that. (Does anyone know?) But in any case, it is possible to donate to the Stanford ME/CFS research program. (Specifically, Montoya's ME/CFS research program.)

    See bottom of this web page, and click through:
    http://med.stanford.edu/chronicfatiguesyndrome.html
     
    Last edited: Jun 20, 2015
  19. aimossy

    aimossy Senior Member

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  20. Sasha

    Sasha Fine, thank you

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    Thanks, Bob (and @aimossy) - this is why I need other people's brains and knowledge! :thumbsup:
     
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