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!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

Invest in ME now fundraising for a Rituximab trial!

Discussion in 'Fundraising' started by snowathlete, Jun 7, 2013.

  1. snowathlete

    snowathlete

    Messages:
    2,019
    Likes:
    2,054
    UK
    http://www.investinme.org/IIME Statement 1306-01.htm


    It has become clear from our conferences and research meetings that international biomedical research collaboration was necessary to make rapid progress with ME research.
    Today (6th June 2013) the Norwegian Forskningsradet has agreed to fund the next phase of trials of Professor Olav Mella and Dr Oystein Fluge from Haukeland University Hospital in Bergen [1]. These trials have already been discussed in the last three Invest in ME International ME Conferences, as well as research meetings organised by Invest in ME in collaboration with Alison Hunter Memorial Foundation of Australia.
    Clinical trials by other groups are important and will provide the continuity and progress we look for. IIMEC7 highlighted the case for clinical trials [2].
    Invest in ME and its supporters have decided that a UK Rituximab trial is important in this mix and we have been making initial discussions with researchers, across countries, to facilitate this.
    We have now decided to embark on a fund-raising exercise to raise funds specifically for a UK Rituximab trial. We believe we have possibility to do this following our BMRMEC meeting [3] and IIMEC8 conference [4]. There is an opportunity to perform this and we now need help to raise funds.
    We have proposed this with our supporters at Let's Do It for ME and believe it can be achieved.
    We have therefore decided to create a separate strand to our Biomedical Research Fund which will be explicitly used for this UK rituximab trial.
    Here is the link for donations -
    DONATE HERE for the Invest in ME BIOMEDICAL RESEARCH FUND - RITUXIMAB TRIAL

    [​IMG]
    We aim to build up a fund to accomplish this ourselves but we are happy to accept support from others who have the same objectives as Invest in ME.
    A specific fund-raising thermometer will be created just for this project. More details of the project will be unveiled as we progress. More details of donating specifically to this fund are available at this link - IiME Rituximab Trial
    We invite people to support this great venture and we have already contributed funds for this and have fundraising projects coming online which will add to this.

    In addition IiME will be using the BRF to initiate other projects.
    More details of these will be available as we continue the planning.
    IiME are also discussing with our EMEA colleagues on ways to increase biomedical research into ME and have recently completed an interesting meeting which discussed this topic, amongst other lines of research.
    We are confident these projects can be performed and started relatively quickly.
    If you feel you can support us in any way - by fundraising, by spreading word of this, by simply letting us know that you agree with us then we welcome that support.

    ME patients and their carers, when determined, are amongst the most resourceful around. The Let's Do It for ME campaign has energised ME research.
    You can do it - We can do it.
    Let's Do It For ME!

    References:
    1 B-lymphocyte depletion with Rituximab induction and maintenance in CFS/ME. A multicenter, randomized, double blind, placebo-controlled study http://bit.ly/111BQ6D
    2 6th Invest in ME International ME/CFS Conference 2011 The Way Forward for ME - A Case for Clinical Trials http://bit.ly/11Ht7VW
    3 Biomedical Research into ME Collaborative Meeting (BRMEC) Crowdsourcing for ME http://bit.ly/ZK7eoC
    4 8th Invest in ME International ME (ME/CFS) Conference 2013 Infection, Immunity and Myalgic Encephalomyelitis - Mainstreaming ME Research http://bit.ly/10Iw7bg
    Sasha, maryb, Purple and 2 others like this.
  2. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    Lets hope they get the same response as Norway - goodness knows we need it here in the UK.
    Every little helps - I just know we can do it too.
    snowathlete and Sasha like this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK
    snowathlete likes this.
  4. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK
    Here's their Justgiving blurb:

    Thanks to the work of Invest in ME and their supporters, plans are underway for a UK clinical treatment trial of Rituximab. This drug helped two thirds of patients who took part in research in Norway to such a remarkable extent that it made headline news. The Norwegian researchers are now moving on to the next stage of trials, thanks to a successful fundraising campaign run by patients.

    We need your donations and sponsorship to help raise funds for the UK Rituximab study so that work can begin without delay as soon as the researchers are ready. Donations will go to a special IIME Rituximab Research Fund, separate from the main IIME Biomedical Research Fund, which is being used for other biomedical research projects.

    IiME is run by volunteers. There are no salaries and no funds will be used for charity admin. All donations will be used in full to finance the Rituximab research. We will keep you updated with progress and news about the Rituximab Research Fund.
    Find out more at http://www.investinme.org/IIME Statement 1306-01.htm

    Let's do it for ME is an awareness and fundraising campaign run by people with myalgic encephalomyelitis in support of the work of Invest in ME. Find out more at http://ldifme.org
    snowathlete likes this.
  5. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK
    Bob, didn't you post recently about the fees associated with paying various ways? Would you mind posting a link?
    snowathlete likes this.
  6. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    I donated by Paypal is there a charge for this? Its easier for me but no good f they charge.
    snowathlete likes this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK

    They're off to a good start! They've got £1,300 already, including offline donations. That page only went online an hour ago, I think, and it's already got £170 from four different donors.

    Time to pile on, I do believe!
  8. OverTheHills

    OverTheHills

    Messages:
    274
    Likes:
    177
    New Zealand
    I've donated and they have 1% of target already! Alas couldn't get gift aid as not resident. OTH
    snowathlete likes this.
  9. Bob

    Bob

    Messages:
    7,808
    Likes:
    9,425
    England, UK
    snowathlete and Sasha like this.
  10. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK

    Well done! That target of £150,000 (about US$ 100,000) can't possibly be for the whole trial but it's a healthy wodge for getting some things in place, I imagine. They don't have details on that kind of thing up yet - they're going to be making more announcements down the line filling in the details.
  11. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK

    Thanks! Actually, I don't think that the PayPal Giving Fund is the same as PayPal. The PayPal Giving Fund seems to have replaced MissionFish, which was how charities got their cut if you sold something on Ebay. I don't think it applies in general to charity payments made through PayPal.

    http://www.missionfish.org.uk/whats...-missionfish-becoming-paypal-giving-fund.html

    I could easily be wrong though! I've run out of brains now and am off to bed. Somebody please correct me if I'm wrong! :)
    Bob likes this.
  12. Bob

    Bob

    Messages:
    7,808
    Likes:
    9,425
    England, UK
    Sorry, I slightly misunderstood the situation. Using PayPal on the Just Giving website will incur a fee for the charity, because Just Giving charges charities. I thought that maryb meant that she used PayPal's own charity giving service, which is called PayPal Giving Fund.

    I've deleted the info that I posted re PayPal, but it can still be found on the other thread:
    http://forums.phoenixrising.me/inde...ity-giving-websites-charges-comparison.23380/

    Edit: Our posts crossed, Sasha
    Battery Muncher and Sasha like this.
  13. Bob

    Bob

    Messages:
    7,808
    Likes:
    9,425
    England, UK
  14. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Valentijn and Sasha like this.
  15. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Battery Muncher, snowathlete and Bob like this.
  16. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK
    Battery Muncher and sproggle like this.
  17. Battery Muncher

    Battery Muncher Senior Member

    Messages:
    182
    Likes:
    136
    Now up to £7334 in about 3 weeks! Very good, especially because - as Sasha points out - there hasn't been a big launch yet. :)
    Sasha and snowathlete like this.
  18. Sasha

    Sasha Fine, thank you

    Messages:
    7,618
    Likes:
    5,675
    UK
    Over £8,000 now - and still amazing, given that they haven't really launched yet.
    Bob likes this.
  19. Bob

    Bob

    Messages:
    7,808
    Likes:
    9,425
    England, UK
    sproggle likes this.
  20. maryb

    maryb iherb code TAK122

    Messages:
    2,738
    Likes:
    1,758
    UK
    They need some big hitters now to really get going.

See more popular forum discussions.

Share This Page