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Rituximab: Norwegian multicenter study fundraising

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

  1. Sasha

    Sasha Fine, thank you

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    Thanks, Belive - that would great.
     
  2. Kate_UK

    Kate_UK Senior Member

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    7 million kroner is about 1,221,539.48 USD.

    http://mariasmetode.no/2013/03/140-pasienter-7-millioner-kroner-90-dager/

     
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  3. Maria Gjerpe

    Maria Gjerpe

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    Oslo, Norway
    Hi, all!

    -and thank you so much for supporting and informing about the initiativ MEandYou by linking to it!.

    I´m Maria, doctor of medicin, ME-patient for years and years, but now with a major response to Rituxan. I´m the creatore of this initiative.

    MEandYou is not a foundation - its an association.

    The reasons for that is mainly two:
    1. To be registrated as an foundation we needed to have 150 000 NOK before we started. We hadn´t.
    2. This is an initiativ that is going to work fast and focused on one target: Raise money through crowdfunding 7 million NOK/ 940436 EUR/1.2 USD in 90 days to finance 140 ME-patients for third phase of the Rituxanstudy at Haukeland Hospital.

    And that, my friends, is what we are going to do. And the BEST part is, we are going to do it together.

    We got a written consensus about the transfer of the money with Dr. Mella and the hospital. On wednesday this week, I´m having my last Rituxan and at the same time will hand over the first collected money. I´m really loooking forward to do that! Please visit our Facebook-page. I might bring some pictures ;-) An while you are on it, you might find something that you are wondering about at our English-section at our site.

    (Sorry, I know my English is bad, but I hope you understand it. I might have problems with understanding your questions, if you have some.)

    Welcome, friends - and, yes, we ARE doing this together. Now. In 90 days. Or, that is, 88 days from to day.
     
  4. Purple

    Purple Bundle of purpliness

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    Hi Maria and welcome. Why only 90 days to raise these funds?
     
  5. Maria Gjerpe

    Maria Gjerpe

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    Thank you for your question and for your greeting, Purple!

    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 well and healthy, as I am know.

    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 initiativ 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 hope this answered your question - I recon a lot of people wondering about the same thing.

    I´ve explained a bit more in my blogpost 140 patients. 7 million NOK. 90 days. Scroll to get the English text.
     
  6. Blue

    Blue

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    Hi Maria,

    it is so great that you dedicate your healthy time to this cause! Thank you so, so much!:)

    Best, Blue
     
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  7. Maria Gjerpe

    Maria Gjerpe

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    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/
     
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  8. Tuha

    Tuha Senior Member

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    Hi Maria,

    I appreciate your iniciative and I will also try to support it. I think if the campaign will be visible it´s realistic to achive the aim during 90 days - why shuld we hesitate to support it? it´s the only chance we have for this moment and it´s pity to lose every single day.

    I will propose you one thing. Most of the patients dont read fundraising section. The best way is always to ask the owner of the web site/ facebook page or the main representative of an organisations to post about your initiative on the main page and to make the call to the members of his organisation (most of the leaders of ME organisations have their own mailing list of their members so they can do a call for this action also throught the mailing list). More patients will follow a call if the call is made by a well known person in their community.

    So i would try to contact the leaders of ME organisations, web sites/ facebook pages, forums and asked them to make the call for this initiative and to send an email to their members. Some will refuse to make a call because they say that they dont want to ask money from patients but maybe at least they will post about on their web sites. Also it´s good if you will prepare a poster/template about this action because some leaders are too busy to prepare something.

    Good luck
     
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  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I just made a little donation, not sure what it will add up to in your currency?

    GG
     
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  10. Maria Gjerpe

    Maria Gjerpe

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    Thank you, Thua!

    I thought the same thing. No more waiting. I do not want to use my energy and focus on the controverses. What we need is solid knowledge, based on real, hardcore science.

    Thank you for your advice! I would appreciate it very much if you would contact leaders. I agree with them: The healthy ones are the ones thats supposed to walk along with the sick. Actually, I wrote a post about it today.

    Walk with us - maybe a post to spread www?
    Also: This page about what MEandYou is, and how you support, could be something that will explain and easy to spread?

    Of course we can do this! If I didn´t belive so, I wouldn´t have tried ;-) BUT: I can not do this alone. I am no Superwoman, only a person that want this search for answers to continue - and a person that strongly believes in the power of the masses, and their ability to change for the better.

    Thank you for walking along. Make more people come with us. Also all the healthy ones, with strength and health intact.

    All the best,

    Maria
     
    ukxmrv likes this.
  11. Maria Gjerpe

    Maria Gjerpe

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    I do not know - but what I do now is that I am happy for all the donations we got, all the people that support, all the people who joins and becomes a part of MEandYou.


    All the best and a big welcome,

    Maria
     
    ukxmrv likes this.
  12. Chris

    Chris Senior Member

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    Maria, thank you for this great project--just made a tiny donation via PayPal, which seems to be working fine. Have spread the news to those of our local group who are reachable by listserv, and though many are very short of cash (on or off Disability) some may have friends with more cash. Let's hope this thing flies! Best, Chris
     
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  13. Maria Gjerpe

    Maria Gjerpe

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    I just want to inform you all that we, me and you, tonight has managed gather 38051 USD/ 29265 EUR this far.
    That means 4 patients to Haukeland Hospital. Only 136 to go!

    I´m leaving for Haukeland Hospital on wednesday for my last infusion of RTX, and off course to hand over the money collected as well. We might also have time for an interview with Fluge and Mella and I might write an article afterwards.

    Is there something you want to ask them? Please click and follow this link, if you have any questions for the Drs.

    Thank you for your donations. I know several of you have donated. Please try to make your healthy friends come along. They should walk with you.

    All well,

    Maria
     
  14. Chris

    Chris Senior Member

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    Could perhaps a forum manager/monitor give this thread greater prominence? It seems a major project to me--if it really gets going, it might make a real difference to our lives! Chris
     
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  15. Tuha

    Tuha Senior Member

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    I know that admins prepare an article about and they will post it to the main section
     
  16. Maria Gjerpe

    Maria Gjerpe

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    I don´t know if you like som updates here, or not? Tell me if you do not, ok?

    456 323 norske kroner,
    EUR 61283
    US$79318
    737 donations
    That means 9!
    In about twelve hours, the money is handed over to the hospital. Will we reach 10?
    7 million NOK, 90 days, 140 ME-patients to Haukeland University for research.

    You are welcome to walk with us. This is our road.
    Do you want regular updates and info - please join us at

    https://www.facebook.com/MEYOU.nowww.meyou.no

    (If this post is inappropriate, please let me know.)
     

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  17. Chris

    Chris Senior Member

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    Maria, I welcome updates! And still don't see a piece about this important project on the Home page? Chris
     
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  18. Mark

    Mark Acting CEO

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    Maria is writing that article; I expect she's pretty busy but will get it to us as soon as she can.
     
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  19. Maria Gjerpe

    Maria Gjerpe

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    Good, Mark!

    Then I would like to tell you that I handed over nearly a half million NOK this morning to Dr. Mella and Dr. Fluge at Haukeland Hospital. This is on Haukeland University Hospitals website, also shared on their Facebookpage. Hope google translate will do the job for you :)

    http://www.helse-bergen.no/aktuelt/nyheter/Sider/140-pasientar-7-millionar-kroner-90-dagar.aspx
    (Since we launched ten days ago, I´we been interview about MEandYou on national radio, national Newspaper twice, will be interview on radio on monday, and probably on nationl TV within a week.

    Next step for me is international blogs, forums, then newspapers - and of course TV. But. I hav little time. 80 days left. If some of you wants to join in and lend a hand or a contact, please let me know. This is in the benefit, not for me, that now is well and healthy, but for all of you that seeks answers and want knowledge, no matter the answer.

    I can not do this alone. I just make the tools. You are the one that can make use of them :) )

    We are mostly on Facebook
     
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  20. taniaaust1

    taniaaust1 Senior Member

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    Maria.. Im trying to give you a hand there (got a headache now from doing this but its fine as what you are doing is sooo needed and I hope others will support you with it).

    I want you to know that I just sent the following email to my local ME/CFS society (SA ME/CFS society) in the hopes they will put it on their website. (maybe this is helpful for others to use with a few alterations eg change the name to send to their ME/CFS societies to see if we can get this fundraising effort more known fast. Mark/Maria.. maybe my letter can be very slightly altered for article for PR on it, it would probably take less then 5mins to cut a few parts out and have it okay for PR article (that I guess would help you Maria if you dont have to put together an article for her).

    anyway..here's what I sent to SA ME/CFS society about it.

    "Im wondering if you can inform people about the following throu the societies website as I think some would like to know about this so they could support (is also a good general interest ME story seeing Maria is so well from the Rituxan infusions and able to now go and do what she is. Im amazed how much this drug has helped her to the point she's calling herself "healthy").

    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 in could bring better health to many ME/CFS patients and help to make many well again. All 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 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 a ME patient 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 well and healthy, as I am know.

    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/
    "

    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)

    ............................

    Maria is calling for others in this initiative to help her succede in this goal to get the money for this important study and hence why I thought I'd message my ME/CFS association as I hope you can get the word there about this as Im sure others would like to know and help. She's so far been on her national radio and twice in her national newspaper about this fundraising endevour with more interviews coming up and now is reaching out internationally for help to achieve the goal.

    One person cant achieve much but together we can. I hope the ME/CFS SA org can give some support to this very good cause.

    Yours Sincerely
    Tania Selth
    (ME patient in Adelaide)

    ps for more info on this see http://forums.phoenixrising.me/index.php?threads/rituximab-norwegian-multicenter-study-fundraising.20929/page-2#post-341080 (from post 22 onwards) if you want to vertify or add in something in an article on Maria, her fundraising effort and the Rituxan study, which I forgot to put in my email. She's going to be doing updates there on how the fundraising for the study goes."
     
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