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Rituximab: Norwegian multicenter study fundraising

Discussion in 'Fundraising' started by Living Dead, Dec 15, 2012.

  1. Living Dead

    Living Dead

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    Link: http://me-forskning.no/english/

    The next study of Rituximab for (ICC) ME is on hold due to lack of funds. The norwegian ME association together with patients have started fundraising to finance the next study.

    I think there is a transaction free for international donations ($9 usd) so if you don't have a norwegian bank account you may want to hold your donation until they have set up a payment system. Especially with a small donation it will vanish into bank fees.
    Donate to:
    IBAN NO67 1503 3204 334
    BIC DNBANOKKXXX

    Update (I posted this later in the topic, but I'll put it here so everyone sees it):
    Svenja, Ninni, Roy S and 1 other person like this.
  2. justy

    justy Senior Member

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    Thanks for posting.

    I think its really important that everyone gets behind this fund raising campaign. Not only is this our biggest breakthrough in possible treatments for a long time, but Fluge and Mella have commited themselves to working out the underlying mechanisms of why Rituximab is working in this patient group (autoimmune etc?)

    There work has also helped to bring forwarde a new attitude towards M.E, where the biopsychosocial models star is waning.

    I am going to wait until they have bank payments scheme set up for foreign donations and then will donate a small amount. Perhaps we could convince those well people outside of the community or our families to give to this cause.

    Justy x
    Bunchy, Ninni and Sasha like this.
  3. Sasha

    Sasha Fine, thank you

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    I agree this is a very important study to get funded. Just as getting Ampligen approved by the FDA would have an impact well beyond those patients prescribed it and well beyond the US, getting conclusive results on Rituximab from a large trial would have effects well beyond patients suitable for treatment with it.

    If Rituximab helps ME/CFS then it will be a huge stimulus for other drug trials and for a shift away from the psychosocial model.

    I hope there is someone who speaks Norwegian who can alert us when they've got their system set up for foreign donations!
  4. Belive

    Belive

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    I will be pleased to alert you:)
    Sasha and Purple like this.
  5. Kelly

    Kelly

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    The current exchange rate is 1.00 NOK = 0.19 USD. In general payments through PayPal have lower fees.
  6. Living Dead

    Living Dead

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    The MEandYou Foundation (another initiative) is also fundrasing to support the same study and they have started to accept donations via PayPal: http://www.meandyoufoundation.no/

    Use the yellow "Donate" button on the right. And tell everyone you know.
    Ninni likes this.
  7. Sasha

    Sasha Fine, thank you

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    Are they a well-known foundation?
  8. justy

    justy Senior Member

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    This is from the MEand You foundations website:

  9. justy

    justy Senior Member

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    Sorry missed this bit:
  10. justy

    justy Senior Member

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    A bit more about what and who the foundation is - directly set up to fund the Rituximab work of Fluge and Mellla

    Ninni likes this.
  11. Living Dead

    Living Dead

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    MEandYou Foundation is a newly started foundation to collect money for this particular study. The people listed as "the board" are well known persons with a known good reputation from media presence (one of them got well from rituximab).
    justy and Ninni like this.
  12. Sasha

    Sasha Fine, thank you

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    Thanks - that reputation issue was what I was really after (while feeling a bit weird about coming out and saying so) - didn't want to be sending money off to some account in the Caymans! :)
    Maria Gjerpe likes this.
  13. Living Dead

    Living Dead

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    Thank you for asking, it made me do a more thorough check on it. One can never be too careful with the combination of money and the internet!
    Maria Gjerpe and Sasha like this.
  14. urbantravels

    urbantravels disjecta membra

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    Is this foundation officially registered as a charity under Norwegian law? Sorry, I don't know what the laws are in Norway. In the U.S. a charitable organization must register under section 501(c)(3) of the Internal Revenue Code in order to be considered a tax-exempt organization.

    I'm sorry, but that is not enough information for me. What kind of documentation is available to show how the money is being collected and exactly how it will be spent?

    Even for my favorite cause in the world - ESPECIALLY for my favorite cause - I want very good assurances that donations are being properly collected and accounted for, and that they are used efficiently to support the stated cause.
    Maria Gjerpe and Sasha like this.
  15. Living Dead

    Living Dead

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    Then you don't have to donate.
  16. Kate_UK

    Kate_UK Senior Member

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    http://www.investinme.org/IIME-Newslet-Dec12-04.htm


    Belive likes this.
  17. Belive

    Belive

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    I do not know about the meandyou foundation, but i can conferm that http://me-forskning.no/english/ is a registered charity foundation in wich you get a tax refound for donations above 500NOK. The money goes to the same place either way.
  18. Sasha

    Sasha Fine, thank you

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    Thanks - I think a lot of us might be waiting for ME-forskning to get Paypal set up so that they don't lose some of our money in bank transfer fees. Presumably getting a tax refund is only for those in Norway?
  19. urbantravels

    urbantravels disjecta membra

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    Thanks for the information. Of course, the ability to make tax-deductible donations is not relevant between countries, but qualification for a tax-exempt status does provide some level of assurance that the organization is legitimate and supports its stated purpose.
  20. Belive

    Belive

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    I will press matters about paypal and get back to you.

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