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MEandYou and Rituximab: Dr Maria Gjerpe’s Fundraising Marathon Update

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by Sasha


Maria gets 300,000 krone from the Kavli Foundation
(Photo: Skjalg Ekeland/BA)


I call Dr Maria Gjerpe’s 90-day campaign to raise money for a crucial confirmatory Rituximab trial a ‘fundraising marathon’ but that hardly covers it. It’s more like a triathlon a day for three months. Maria, previously bedridden for years with ME/CFS, has been working 12-hour days non-stop to fund the Phase III trial on the drug that has, for now, restored her to health.

As she explained in her article in March, Maria doesn’t expect to stay well. She was a patient in Drs Fluge and Mella’s ME/CFS pilot study on Rituximab and received her last infusion of the drug earlier that month. She expects that, like 80% of the patients in the pilot trial, she will relapse within a few months and has dedicated 90 days of this precious time to fundraising.

The results have been amazing. In 56 days, Maria has raised 1.8 million Norwegian krone ($310,000; €240,000; £200,000) from over 2,300 people all over the world: an average of $5,500 (€4,300; £3,600) a day.

The two largest donations appeared when Maria was filmed on 30 April for Norway’s TV2 at Sparebank 1 SR-Bank amid a symbolic pile of cash, to hand over to Dr Mella the 1.3 million krone that she had already raised. The regional director of the bank produced an additional pile of 200,000 krone as a donation from Sparebank and a representative of the Kavli Foundation, a big supporter of Haukeland Hospital, gave a further 300,000 krone. ‘This is a great help to get this study started,’ said Dr Mella. ‘It was totally unexpected. I’m almost speechless.’ We can thank Sparebank and the Kavli Foundation on their Facebook pages!


Dr Olav Mella looks extremely happy as Maria presents him with 1.8 million krone
(Photo:Skjalg Ekeland/BA)


Maria says, ‘Dr Mella is not easy to move, and is a man of few words, but more than words to me were his eyes and how he hugged me really long and with warmth. He also said that it is touching to think of more than 2,000 patients who have contributed and that the money given also represents hope. He sends his thanks to all.'

Maria has managed this through very hard work and using social media to harness patient-power and ask for donations and help. She got coverage on national TV, radio and newspapers (and beyond, in famous German news magazine Der Spiegel).

She has a campaign blog, a Facebook page, and a Twitter feed, and uses her well-attended live speeches on health and technology to mention MEandYou, pulling in more donations.

‘To the extent that I have a typical day’, says Maria, ‘it starts with checking out what has happened during the night in the nine different email and social media channels connected to MEandYou. I update information, answer questions, thank people, and if there are any ‘fires’, put them out. Then I talk to journalists or contributors on the phone and have face-to-face meetings. A campaign like this is about being the campaign - being sincere, humble, but tough enough to be absolutely clear about the goal, the path and the communication, down to every word.’



A painting by Maria – one of several donated items to be auctioned for MEandYou


MEandYou now even has a Norway-only online shop of donated craft and artwork (lovely knitting!), with all proceeds going to the research. Maria, who has donated a painting herself, says, ‘I think it’s just very touching how people donate things and want to contribute.’.

Patients worldwide have piled in to help: sharing links to MEandYou to raise awareness and invite donations, starting local fundraising drives, asking local businesses for donations, translating the MEandYou press release into eleven different languages, approaching their own countries’ media, making campaign posters. And of course, many have donated.

Maria is also turning to patients and volunteers to crowdsource a MEandYou event to be held on May 13 outside the Norwegian parliament in Oslo. The event will include speeches by Maria and the Norwegian ME Association. There will be music, images of patients – including bedsheets inscribed with patients’ stories and dreams or the outline of patients’ bodies – and gloves, each bearing a patient’s name, hanging on the branches of the trees outside the building. Politicians have been invited to have their photographs taken in front of the installation on May 15 to show their support.

However, although MEandYou has achieved a great deal very fast, there is only a month to go. The trial cannot begin until the remaining $900,000 (€680,000; £580,000) is in place (the larger sum of 20 million krone referred to in the article on TV2’s news site refers to staff and equipment costs that will be met by the hospitals participating in the multi-centre trial and don’t need to be funded externally). Should we keep donating?

‘Yes,’ says Maria. ‘There is a written agreement with Haukeland Hospital about what will happen if we don’t raise enough money and others don’t come forward to close the gap. The first option is to fund Drs Fluge and Mella to do other research related to the ME/CFS Rituximab trial; if that is not possible, we’ll fund Drs Fluge and Mella to conduct other biomedical research into ME; and if that’s not possible, then in consultation with Drs Fluge and Mella, we’ll turn to other biomedical research on ME at Haukeland. The MEandYou board must approve the decision in all cases.’

But it won’t be over when Maria’s 90 days of intensive fundraising is up. She says, ‘MEandYou will exist for one year, until February 2014. Funding has been applied for and it might take some time to get responses, both from businesses and charities. And, of course, I think it would be highly unethical not to fund the last step through government money, if patients themselves through a worldwide initiative have managed to collect a substantial amount of the funding.’

So, Maria’s season-long, daily fundraising mental triathlon continues, with the help of an international and ever-growing network of support. You, your friends and family can donate to the Haukeland Rituximab trial at MEandYou.no.


Related links

The Rituximab Story article on Phoenix Rising

Fluge and Mella’s Rituximab study in PLoS ONE




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Thank you Sasha, a really excellent and important cause and you've done a great job of informing us.

I have been really impressed with Maria - all that hard work...and it really brings it home that this treatment does work, at least for a time...otherwise she wouldn't be able to do this at all!
It's such an important avenue to pursue, and I think what has been achieved already is quite remarkable.
 
Excellent piece, Sasha, thanks. And Maria has done an amazing job; assuming she raises lots of money, but not the full amount, are there likely to be other sources of funding for the Fluge/Mella Rituximab trial that could make up the shortfall?
 
A great article, thanks Sasha. It's difficult to understand exactly what's going on in Norway, because of the language barrier, so thanks for explaining so many details. I'm amazed at how much they've raised.

Now to have a look at the video.
 
Based on past reading about the subject, my understanding is that there is still a chance the the Norwegian government will foot the entire bill for a trial. In which case, the public donations will be used for similar research.
 
Excellent piece, Sasha, thanks. And Maria has done an amazing job; assuming she raises lots of money, but not the full amount, are there likely to be other sources of funding for the Fluge/Mella Rituximab trial that could make up the shortfall?

Hi Simon - as it says in the article, they're asking for funding from businesses and charities and those organisations take time to make decisions. MEandYou will run until February 2014 to give that money a chance to come in. I believe they're also reapplying to the government but I would think it would be unusual for a govt to increase its funding to a particular trial when they've already donated (they gave a large chunk at the beginning - 4 million krone, if memory serves, leaving 7 million krone to raise).
 
Based on past reading about the subject, my understanding is that there is still a chance the the Norwegian government will foot the entire bill for a trial. In which case, the public donations will be used for similar research.

That's not my understanding of how things work - even in normal times, let alone in these times of recession I don't see any government replacing funding that has already been raised when there are other projects all clamouring for money. They've already paid 4 million krone (I think) of the original 11 million krone needed. At best we could hope for a top-up.

I've asked Maria to come and answer these questions in case my understanding isn't accurate - they're important questions.
 
Hi everybody!

Thank you, Sasha, for the great effort in writing this article, and thank you PR that wants to publish it.

I am "nothing" without all the supporters and those of you who carry the word. Without you, I would only be in my closet, fundraising in the darkness. Without you donators, there would be zero on the account.

This is a field that we know little, also about what would happend in the future. That applies also to the funding questions.

This is what I know:
-No, I do not know of any body at the time being that has said that they will fund this 3rd phase-study.

-Yes, Haukeland Hospital has applied once more for money from the Research Council of Norway (RCN, but they have turned them down before, and there is no promises of any funding through governmental/official channels at the time being.

- Yes, MEandYou has applied for funding from several organizations and businesses, but it takes time to get answers from them.

IF the study gets more funding than it seems to have at the time being, the Haukeland scientists actually both need more funding for this study, AND there are a lot of other very important (in my eyes) work in the field of biomedical research on ME that they need to pursue at Haukeland hospital.

This team is amongst very few, again from my point of view, reliable scientists that may point the direction for an important path for the future in science for ME-patients.

Are you on Facebook? Follow updates: https://www.facebook.com/MEYOU.no I try do do them both in English and Norwegian for you to get information!
 
While I was reading this article, I felt like I was receiving a blood transfusion. Thank you, Sasha!
I have to be honest with you. When I first heard about this monumental project, I thought to myself that there is no way that they can come close to accomplishing raising so much money in such a short time. I didn't know Maria then. Wow. She is a one person army!
 
While I was reading this article, I felt like I was receiving a blood transfusion. Thank you, Sasha!
I have to be honest with you. When I first heard about this monumental project, I thought to myself that there is no way that they can come close to accomplishing raising so much money in such a short time. I didn't know Maria then. Wow. She is a one person army!

I know - it's absolutely jaw-dropping. At the top of her Facebook page:

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

there's a big banner with 140 purple hands, each hand representing one patient in the 140-patient trial that she's trying to fund. Every time she gets another patient's-worth of funding, one of the hands turns bright red.

At the beginning of this, none of the hands were red. Only a couple of weeks ago, only the bottom line and a bit had filled up. But since Maria went to the bank and got those donations, almost two lines of hands - representing an amazing 37 patients funded - are now red.

It's a great way of showing how much she's raised - over a quarter of the total funding already and in a very short space of time.

When people see others donate to a cause, and see it winning, they'll join in. I hope that will be the case with Maria's efforts.
 
May I suggest something, in the spirit of what Sasha says here, and that she has written an excellent article on earlier?

If and when you donate: Write it on our Facebookwall (https://www.facebook.com/MEYOU.no) :
"Yes! I have donated, and I´m proud of it". and then where you come from.

That will show people who hesitate that its perfectly allright to support too. (And when you donate, you get something we made, Use it if you like and support twice :))

High Five!
 
At the beginning of this, none of the hands were red. Only a couple of weeks ago, only the bottom line and a bit had filled up. But since Maria went to the bank and got those donations, almost two lines of hands - representing an amazing 37 patients funded - are now red.

One more red hand now - 38!

Just amazing...
 
At the beginning of this, none of the hands were red. Only a couple of weeks ago, only the bottom line and a bit had filled up. But since Maria went to the bank and got those donations, almost two lines of hands - representing an amazing 37 patients funded - are now red.

One more red hand now - 38!

Just amazing...
Yes, 38.
Thanks to you, folks, that donate and spread the word!
 
I "liked" the MEandYou Campaign on FB a while ago, but haven't been keeping close track. This is amazing news, and offers such hope. I won't go into the "if only's" .... about this kind of study being funded in the US.... Thank you Sasha, for a well written article & video upload....and thank you Maria for your hard work.
 
I "liked" the MEandYou Campaign on FB a while ago, but haven't been keeping close track. This is amazing news, and offers such hope. I won't go into the "if only's" .... about this kind of study being funded in the US.... Thank you Sasha, for a well written article & video upload....and thank you Maria for your hard work.
Great to hear that Sashas article got you "on track" again ;-)

It´s not the easiest part, to be bilingual on Facebook, but I try to do the updates in both languages, and all the "badges" added are in English and Norwegian. I hope you share them!
 
Great to hear that Sashas article got you "on track" again ;-)

It´s not the easiest part, to be bilingual on Facebook, but I try to do the updates in both languages, and all the "badges" added are in English and Norwegian. I hope you share them!

Maria, I'm starting to follow you more closely now. What I do is copy and paste the Norsk into google translate, and it does a pretty good job....

http://translate.google.com/#no/en/Lykke til! Heier på dere!

I've been reposting your campaign efforts to my wall, with general descriptions of your efforts.

I'm a little confused now.... how much more needs to be raised, and by which deadline? The last I read you have enough funding for 36 patients right now?

Takk!
 
Maria, I'm starting to follow you more closely now. What I do is copy and paste the Norsk into google translate, and it does a pretty good job....

http://translate.google.com/#no/en/Lykke til! Heier på dere!

I've been reposting your campaign efforts to my wall, with general descriptions of your efforts.

I'm a little confused now.... how much more needs to be raised, and by which deadline? The last I read you have enough funding for 36 patients right now?

Takk!

Still needs $900,000 - Maria's 90-day campaign ends around 6 June, I think, but the MEandYou coffers stay open until Feb 2014. A lot of funding has been applied for and it takes businesses and charities a while to make decisions. There's funding for 39 patients now but the trial can't begin unless funding for all 140 is in place.

It was Maria's big event outside the Norwegian parliament today - I wonder how that went!