Rituximab: Norwegian multicenter study fundraising

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):
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.
 

justy

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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
 

Sasha

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I am going to wait until they have bank payments scheme set up for foreign donations and then will donate a small amount.
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!
 

justy

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This is from the MEand You foundations website:

FOR ENGLISH SPEAKING SUPPORTERS:This is a patient started initiative for fundraising 2 million USD through crowdfunding of a randomised clinical trial to find mechanisms of the illness and treatment for hundreds of thousands of ME/CFS-sufferers across the world. You can contribute by clicking on the "Donate"-button on this page. Read more about the MEandYouFoundation

The original Rituxan findings from Haukeland Hospital that was published in PLoSONE in October 2011 showed promising results for CFS-patients. 67% had major or moderate overall response. We want further research in this area to conclude. The official health care system did not fund this study or this research field, but found the Rituxan study good with high quality. We want further research. Patients, their friends and relatives are gathering to fundraise the study themselves through crowdfunding.

[/QUOTE
 

justy

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Sorry missed this bit:
Do you want to contribute?The best solution for foreign donations is to use the "Donate" button on this page. We use PayPal for secure transfer of the donation. You can use credit cards such as VISA and Master Card, and you are not required to create a PayPal account to be able to make a donation. Please engage by sharing this site and follow us on Facebook, Twitter or LinkedIn by clicking the icons or links. Your donation is important, small or big.
 

justy

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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

Why MEandYou?

What if it turns out that the research you, as an individual support, will be a breakthrough in the medical field? What if you are one of those people who in few years can say that, yes, I was a part of it!

We, the patients, the families, the friends pass those well-established channels and contributes funds directly to the research projects we want to support, so that they become a reality. Do you want to be a part of it? Donate, small or big, on the donationpage and share this site. Follow us on Facebook, Twitter and LinkedIn

ME/CFS is a poorly understood, but debiliating, nevroimmunological illness with none or little treatment, that affect hundreds of thousands people world wide. Have you ever thought about how much the society would save just by getting a few of those sufferers back in work and as participients og the community?

Read more about the Norwegian Haukelandstudy. Haukeland is situated in Bergen. We also want to show the world that Norway, as a nation, is capable of contributing with new knowledge worldwide. There is a huge international interest from various research groups.

One, clear goal
The only goal of this fundraising foundation will be to finance this specific purpose: the bigger RCT on Rituxan lead by professor Olav Mella and head of science Dr. Øystein Fluge, Haukeland University Hospital, Norway.

After this sum is accomplished and the study is on its way, the foundation will be dissolved.

If we raise more than 2 USD, the funding raised will still go to the department at Haukeland for further and related studies on CFS/ME, but only those lead by the scientist mention above.

Minimal expences
This is a independent, pro-bono foundation. Everyone at the board works for free. This is the board for MEandYouFoundation. There are no expences for administrasion of the foundation. All fundraising will have some mandatory fees to the payment service provider, an accountant and registration fee.


You know what you support
The whole funding will provide only for Haukeland Hospital, supervised by Prof. Mella and Dr. Fluge, no other studies og projects. There will be no administration expences, expept from the mandatory ones. You decide.

Support science and evidence based treatment!
Be part of the movement - and share the information and passion for change by sharing this website worldwide and donate to support science on the donationpage.Thank you!​
 

Sasha

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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).
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! :)
 

Living Dead

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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! :)
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!
 

urbantravels

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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.

well known persons with a known good reputation from media presence (one of them got well from rituximab).
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.
 

Kate_UK

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


The Norwegian ME-association has now launched a website for a fundraising for the continuation of the Rituximab-study by Drs Mella and Fluge of Haukeland University Hospital in Bergen.
http://me-forskning.no/
Invest in ME wish to give this campaign our support and we will attempt to help as best we can, recognising how important this is for future research and developments of treatments for ME.
 
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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 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.
 

Sasha

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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.
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?
 

urbantravels

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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.