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!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

Rituximab: Norwegian multicenter study fundraising

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

  1. taniaaust1

    taniaaust1 Senior Member

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    Maria/mark.. If okay with you Maria.. Ive just submitted an article on you Maria and your fundraising efforts to PR.. and asked if Mark can donate any payment for it to you and your fundraising effort.

    Mark/Kina (or any other PR high up please respond)..would PR mind at all if I send the same thing Ive pulled together from Maria's posts to Cort for his site? I think its very important this info gets out fast if Maria is to achieve the goal she's trying to do.
    Maria Gjerpe likes this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I guess you missed the news but this is not longer Corts site, he has started another, which you might want to ask him to post there also.

    GG


    http://www.cortjohnson.org/blog/201...good-bye-to-phoenix-rising-opens-up-new-site/
  3. taniaaust1

    taniaaust1 Senior Member

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    Im GG.. Im well aware of that news. I just thought I'd best ask permission as my article has quotes made by Maria from THIS SITE.. so thought I'd best ask before I sent the article to Corts and his site. I dont want to get into trouble with PR for taking posts from here and sending them elsewhere even if it is for a good cause.
  4. Maria Gjerpe

    Maria Gjerpe

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    Wow. Thank you, Tania. This is of huge help for me and MEandYou.
    This is what crowdfunding is all about - and it makes me really proud to see that we are doing this together, with what we got.

    Do you mind if I put this on the website for others to download and send to who they chose?

    I am working on making badges with English info on them, so that forums, blogs etc that want to show their support can download them from www.meyou.no and to their own site. I´ll let you know when, if you are interested.

    I´ll try to make an article for Phoenix Rising as soon as possible :)
    taniaaust1, natasa778 and ggingues like this.
  5. Tuha

    Tuha Senior Member

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    Maria, I am also interseted in this article. I would pass it to some ME communities.

    Btw. great job
    Maria Gjerpe likes this.
  6. Sasha

    Sasha Fine, thank you

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    This is great, what you're doing, Maria!

    Have you posted on Co-Cure?

    http://co-cure.org/

    I hadn't heard of them until last week but they have a message board and a mailing list that mails out to people. I posted a message on their message board about the Nature's Bounty online charity voting contest and we immediately had a big boost in voting. I don't know if they sent out a mailing about it. I was very pleasantly surprised - I hope their site might be of use to you. I don't have a contact but anyone can post on the message board.
    justy and Maria Gjerpe like this.
  7. natasa778

    natasa778 Senior Member

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    Best of luck Maria!!!!!

    I have just made a donation. It took me a while to find how/where to donate, so if anyone else is wondering here is the LINK TO DONATION PAGE

    http://www.meyou.no/donate/

    :)
    Maria Gjerpe likes this.
  8. urbantravels

    urbantravels disjecta membra

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    Maria, thank you so much for all you are doing. I've passed along the link to the campaign via Facebook and Twitter, and explained everything as well as I can to my English-speaking friends and followers.

    One thing that is confusing - a person can make a donation to the website at meyou.no, or on the Fundrazr page. If you look at the Fundrazr page, right now it shows 21,670 kroner have been donated. But of course this is only a small percentage of the total, because it appears that most donations have been going to you directly through your Web page. On the Web page, it says that donations total 535,380 kroner. Does that total include the Fundrazr total, or are they different?

    I think one of the reasons people get excited about crowdfunding campaigns is that they like to be able to see the donations adding up in real time. It's satisfying to see your donation, even a small one, immediately added to the total.

    Someone here in the US asked me a question, and I did not know the answer: If you are using Paypal anyway, is it better to use the Fundrazr site or the meyou.no site? In other words, does Fundrazr collect an extra fee of any kind from the donation? If it does, then I would certainly advise people to donate on the meyou.no Web site, even if it doesn't show the total updated immediately :)
    Maria Gjerpe likes this.
  9. Maria Gjerpe

    Maria Gjerpe

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    Thank you for your question!

    It´s best to use Paypal on http://www.meyou.no/paypal/ Thank you!

    Fundrazr collect an extra fee, yes. We try to update every day. :)
  10. taniaaust1

    taniaaust1 Senior Member

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    No I dont mind at all. The article is a lot of what you said anyway.. so consider it yours to use for your cause. My final article I put together to help you without all the other stuff which I sent to PR management hoping they'd use it but Mark said wasnt original enough is below (Ive no idea where its indenting parts more in places then I want it to do)
    ......................

    "ME patient Maria Gjerpe, doctor of medicine, ME-patient for many years has started up a association called MEandYou to fundraise for the very important Dr Mella and Dr Fluge's phase 3 study of Rituxan in ME/CFS patients. If this study ends up vertifying the previous findings, it could bring better health to many ME/CFS patients and help to make many well again. All that is needed is just this one last study for vertification.

    The goal of this initiative is to fundraise in 90 days Raise money through crowdfunding 7 million NOK/ 940436 EUR/1.2 million USD in 90 days to finance 140 ME-patients for third phase of the Rituxan study at Haukeland Hospital. Without funding this study can not go ahead.

    MEandYou launched 10 days ago and has just handed over half a million NOK raised to Dr Mella and Dr Fluge for the study (enough to fund the drug for 10 of the ME/CFS study patients). Please spread the word about this study and the need for funding and this 90 day fundraising initiative. These findings could help so many if vertified by the phase 3 study.

    Why only a "90 day" fundraising initative to raise money for the study?

    Maria who is on Rituxan explains
    As some of you will know, Rtx, has to be infused regularly to keep me healthy. 80% gets sick without it after a certain period of time, if we look at the data from the phase 2 study.​

    I am not going to get any more infusions after the next in a few days. I do not know how long I´m (going to be) well and healthy, as I am now.​

    To ensure that I am capable to handle this enormous job I´ve set out to do, together with you who wants to join in, and to be sure that I´m not going to be sick during the crowdfunding, I´ve decided that 3 months is the limit.​

    If I get as sick as I was before the Rtx, I will not be able to do this at all. I have been horizontal for average 21/hrs/day, and that might be the case in some months from now. This initiative is what I choose to use all my healthy time to do.​

    This is actually a battle against the clock. Use me now, the tools I´ve made, while I am healthy. I might not be here in 4 months.​


    I´ve always said that the healthy ones are obligated to help the sick when I was sick myself. Now it´s my turn.​

    I do my very best and getting knowledge and science in to this field has been my only goal in years. Now we can do this together. If we want to.​

    I made a URL that is easier to remember and to spread to your friends and relatives, if you want to invite them in to MEandYou. http://www.meyou.no/donate/


    One person cant achieve much but together we can.

    links
    Haukeland University Hospitals website on this and Maria's fundraising efforts
    :)
    http://www.helse-bergen.no/aktuelt/nyheter/Sider/140-pasientar-7-millionar-kroner-90-dagar.aspx

    http://mariasmetode.no/2013/03/140-pasienter-7-millioner-kroner-90-dager/ (scroll down for the English translation)
    Chris and Maria Gjerpe like this.
  11. Chris

    Chris Senior Member

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    I think it is very disappointing that Mark nixed this--this is by far the most important funding story going, and it is not being read by enough people; if Mark wants to add something to what you have written, may I assume he would have your permission? This story should be on the "front page," not half buried down here. Mark, are you listening? Chris
  12. Maria Gjerpe

    Maria Gjerpe

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    Oh, friends!

    I´m so happy to see your engagement in this fundraising. Thank you!

    It´s really no problem, whatsoever, with promoting and talking about MEandYou on Phoenix Rising. I have an agreement with Mark, and is writing an article for Phoenix Rising right now. MEandYou also have massive support from the other editors as well, if I have interpreted it correct.

    You know what? When we do this, together, with one, clear goal - we are going to make it! We ARE going to crowdfund a clinical trial on ME on Haukeland Hospital. And you know what else - we are actually making history.

    High Five!
  13. Mark

    Mark Acting CEO

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    As Maria's explained, she and I already had an agreement regarding articles about MEandYou before Tania posted her piece (in fact, we were in contact before Maria joined the forums and I've been helping her in various ways), and Phoenix Rising will be promoting the MEandYou campaign in a number of ways. The front page article is nearly ready and it will be published within the next few days, timed in such a way as to get the most exposure we can offer to a single article.

    There are many factors I have to take into consideration regarding the publication of articles, we have a schedule for articles planned weeks in advance, and there are other considerations regarding timing and other campaigns. There are also resource implications because, as I've mentioned several times, there are a very small number of hard-working volunteers running Phoenix Rising and there is more work going on behind the scenes than anybody imagines. If we had more volunteers, a lot of things could happen more quickly than they do. Until that is the case, I would ask members to be patient and to trust that we are doing our best.
  14. Maria Gjerpe

    Maria Gjerpe

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    Blue likes this.
  15. Maria Gjerpe

    Maria Gjerpe

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    Hi, all!
    As you might have seen, the article about MEandYou and funding of the third phase, Rituximabstudy, is now an article.
    I´ll try to inform you and answer your question in that thread:

    http://phoenixrising.me/archives/16374
  16. Waverunner

    Waverunner Senior Member

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    I don't understand why Roche doesn't offer any money for the study. Even a million dollars would be peanuts for them, while the demand could be gigantic.
    justy likes this.
  17. Helen

    Helen Senior Member

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    I do agree with you.
  18. Waverunner

    Waverunner Senior Member

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    I'd really like to know their reason.
  19. Tuha

    Tuha Senior Member

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    I think it´s because their patent for rituximab is on the end and they will not do much money from it anymore.
  20. Waverunner

    Waverunner Senior Member

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    I don't know if this is true. Drug Re-purposing is a good way of earning money while having only very little approval costs and very little time till approval.
    justy likes this.

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