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

S

Sasha

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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.
 
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S

Sasha

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lycaena said:
Crowdfunds & funds for specific projects
Germany
EBV related ME/CFS research (Prof. Scheibenbogen, Charité Berlin) - Fundraising through the ME/CFS-foundation 'Lost Voices Stiftung' http://www.lost-voices-stiftung.org/crowdfunding-forschung-me-cfs/forschungsprojekt-berliner-charité/
Click to expand...

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?
 
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Sasha

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aimossy

aimossy

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

Effi

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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
 
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aimossy

aimossy

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

Tom Kindlon

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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.
 
S

Sasha

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aimossy said:
Stanford Chronic Fatigue initiative.
Nancy Klimas Nova
Julia Newton Newcastle not sure.
Jared Younger?
Click to expand...

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!
 
S

Sasha

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aimossy said:
Canada groups?
Rituximab Norway?
Click to expand...

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
 
S

Sasha

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Tom Kindlon said:
The Irish ME/CFS Association - for Information, Support & Research (in Ireland) have raised over E250,000 for research.
Click to expand...

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

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
 
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S

Sasha

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Bob said:
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
Click to expand...

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