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Invest in ME reach £100,000 funding target

Discussion in 'Fundraising' started by Sasha, May 31, 2013.

  1. Sasha

    Sasha Fine, thank you

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    They just announced this on Facebook:

    https://www.facebook.com/groups/5804522506/permalink/10151455566717507/

    This is for their 'Let's do it for ME' project:

    LDIFME is a patient-driven campaign to raise awareness and vital funds for the proposal for an examination and research facility that can lead to a centre of excellence for translational biomedical research into Myalgic Encephalomyelitis (ME). The campaign is run by patients and carers who want the findings of high quality research to result in the development of appropriate treatments and who will not give up that hope for the future, despite the huge personal cost to their health that a lot of the campaigning has caused. The LDIFME campaign shows the true nature of people with ME and their families - looking to make progress and regain their health, using forward thinking and a can-do approach to raising awareness and making ME a mainstream illness.​

    All of these wonderful gestures, supreme efforts, and overwhelming generosity are a testament to positive, forward thinking individuals.​

    Thanks to patients and supporters the UK will now be able to claim a promising project to add to the research base - and a foundation for future research.​

    The campaign by ME patients and their families may not receive much publicity but, as we have said before, actions speak louder than awards.​

    We hope to begin the first biomedical research project this year and to follow it with other projects.​

    Remember we all helped them win £2k in a closely-fought online contest a month ago so we can share in that warm glow. :)
  2. snowathlete

    snowathlete

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  3. Firestormm

    Firestormm Guest

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    Is anyone reporting 'live' from the conference today? Just wondered. Ta x
  4. Sasha

    Sasha Fine, thank you

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    Firestormm likes this.
  5. Sasha

    Sasha Fine, thank you

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    This is interesting, from the IiME site:

    Thanks to extraordinary efforts, visionary ideas, tremendous generosity and sheer hard work and dedication patients and their carers and families and friends have helped initiate the foundation project for a start on biomedical research into ME, beginning the first element in a proposal to establish an examination and research facility for ME in the UK.​

    So, what next?

    After the conference we will set out the next plans for implementing our proposal for an examination and research facility and have more details of the foundation project.​

    We want severely affected patients to be involved in studies.​

    We have more research proposals which we have discussed already and hope to be able to propose.​

    We shall discuss with our colleagues in the LDIFME campaign.​

    There are already promising signs that we can make further progress.​

    For a day or a week, though, all of our supporters should congratulate themselves on achieving this first step. Well done - and thank you.​

    More details will appear here shortly and in our newsletter.​
    snowathlete and Bob like this.
  6. Firestormm

    Firestormm Guest

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    Indeed. I can't help but feel though that you don't get much 'bang for your buck' in science and (even) £100,000 isn't gonna get you far. So far as I know (which isn't far with this particular charity) they have never published their exact plans for research - where will the money go? Will they partner with anyone or still insist on going it alone? Who will prove to be their champion?
    At one time I thought this fund-raising was for a centre of clinical excellence - but (if my memory serves) when I asked them on Facebook, it will in fact go to research in the first instance. Again the breakdown of where the money raised will go precisely is unclear.
    I guess they wanted to be sure that the money was in before committing themselves...
    Any thoughts? Ta x
  7. Bob

    Bob

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    Firestormm

    "After the conference we will set out the next plans for implementing our proposal for an examination and research facility and have more details of the foundation project."

    £100,000 isn't much, but if it used as seed money (e.g. pilot studies), then it can be effective.
  8. Firestormm

    Firestormm Guest

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    Indeed. I didn't contribute to this campaign - but it will be interesting to see if they will take things in a new direction with research not done before - or attempt to better clarify some previous attempt.

    I'd also like to hear how they will overcome some of the concerns they themselves have raised about other studies such as recruiting those with 'ME'. I do think that research which is able to embrace the most severe in our community (though this is one heck of a challenge) should be supported of course - I'd like to hear more about it.

    I can't help but feel that IiME have promised quite a bit and criticised others a fair amount and so now it will be interesting to see what they can come up with on their own and how this contributes to the international pool of knowledge.
  9. Sasha

    Sasha Fine, thank you

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    I don't have any information on their specific plans - I agree it would be good to have some, because people like to know what their money will go to.

    Other UK charities (I'm thinking of MERUK and the MEA) tend, I think, to let people apply to them for funding and if they like the applications, fund them, rather than say what they want funded and wait for people to come forward for those projects (mostly). However, OMI have a model where they've got their own research institute with studies ready to go and a foundation that tries to pull in the funding. I haven't followed IiME's history for long but if they've got no history of funding research they might have wanted to rack up enough money first and then, as they neared the target, get the lie of the land.

    Just guessing, I don't know. I'm looking forward to seeing their plans, though.
  10. sproggle

    sproggle Jan

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    Sasha likes this.
  11. Mark

    Mark Acting CEO

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    Hi sproggle, long time no see, nice to see you again. :)
  12. sproggle

    sproggle Jan

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    Hello there Mark you too, yes it's been a while! :)

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