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

May 6, 2013

by Sasha

Kavli Foundation donation at bank 300 pixels

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!

Olav-Maria-Bank 300 pixels

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.’

Maria Gjerpe painting 300 pixes

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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33 comments

{ 33 comments… read them below or add one }

Sasha May 6, 2013 at 1:01 pm

If you don't mind watching an advert for pizza first, you can see video footage from the TV coverage of Maria presenting Dr Mella with the big pile of cash and getting a surprise herself. It's in Norwegian but it doesn't matter – it's all in the body language!

http://www.tv2.no/play/nyheter/innenriks/maria-samlet-inn-13-millioner-til-me-forskning-716469.html

snowathlete May 6, 2013 at 3:09 pm

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.

Simon May 6, 2013 at 4:20 pm

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?

Bob May 6, 2013 at 4:46 pm

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.

Bob May 6, 2013 at 4:50 pm

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.

Tally May 6, 2013 at 9:20 pm

It is amazing what Dr Maria Gjerpe has done. I am truly grateful to her.

I am a bit disappointed at how many people have donated. Only a few thousand patients, and there are millions of us sick with ME in the world.

Sasha May 7, 2013 at 2:23 am
Simon

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).

Sasha May 7, 2013 at 2:28 am
Bob

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.

Maria Gjerpe May 7, 2013 at 3:33 am

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!

Nielk May 7, 2013 at 5:57 am

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!

Sasha May 7, 2013 at 6:06 am
Nielk

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.

Maria Gjerpe May 7, 2013 at 6:44 am

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!

Sasha May 7, 2013 at 1:58 pm
Sasha

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…

Maria Gjerpe May 7, 2013 at 3:58 pm
Sasha
Sasha

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!

Nico May 9, 2013 at 5:13 pm

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.

Maria Gjerpe May 9, 2013 at 5:41 pm
Nico

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!

Nico May 13, 2013 at 2:18 pm
Maria Gjerpe

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!

Sasha May 13, 2013 at 2:52 pm
Nico

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!

Sasha May 13, 2013 at 2:57 pm
Sasha

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

Oh – it was in the newspaper:

http://www.aftenposten.no/helse/ME-…edre-livskvaliteten-7200466.html#.UZFSwqI3urk

Pictures on Maria's Facebook page:

https://www.facebook.com/media/set/?set=a.187886491370540.1073741827.125662110926312&type=1

Nico May 13, 2013 at 3:59 pm
Sasha

Oh – it was in the newspaper:

http://www.aftenposten.no/helse/ME-…edre-livskvaliteten-7200466.html#.UZFSwqI3urk

Pictures on Maria's Facebook page:

https://www.facebook.com/media/set/?set=a.187886491370540.1073741827.125662110926312&type=1

Hi Sasha, thanks for the update! I am following her on Facebook :)

Maria Gjerpe May 14, 2013 at 8:25 am

Thank you for helping me out with updates :-)

The event outside The Parliament went overwhelming well. I called the event "Sheets and stories" – and the whole park was filled up by ME-patients used sheets, on which they had written their stories.

Massive statements that became very visible.

See them on the links that Sasha threw in :-)

Facebook: http://on.fb.me/18IdmW6
Newspaper: http://bit.ly/10TmHCF

Bob May 14, 2013 at 10:10 am

Clickable links

Facebook: http://on.fb.me/18IdmW6
Newspaper: http://bit.ly/10TmHCF

Sasha May 14, 2013 at 10:46 am
Maria Gjerpe

Thank you for helping me out with updates :)

The event outside The Parliament went overwhelming well. I called the event "Sheets and stories" – and the whole park was filled up by ME-patients used sheets, on which they had written their stories.

Massive statements that became very visible.

See them on the links that Sasha threw in :)

Facebook: http://on.fb.me/18IdmW6
Newspaper: http://bit.ly/10TmHCF

Congratulations – it never fails to amaze me what new stuff you think of to do! I'm glad it was such a success. I hope the event tomorrow where politicians view the sheets and artwork and can sign up to show their support goes well.

Sasha May 25, 2013 at 2:45 am

I wish I knew how to post links to individual Facebook messages but if you scroll down a bit you can see that a company has donated a weird sort of mobile lift/elevator for Maria to auction off to raise funds. It looks like quite a valuable piece of equipment so I hope it fetches a good price! You can see it both in action and folded up on her Facebook page (scroll down a bit for the photos):

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

41 patients funded now! Just continues to amaze me.

Bob May 25, 2013 at 3:00 am
Sasha

I wish I knew how to post links to individual Facebook messages but if you scroll down a bit you can see that a company has donated a weird sort of mobile lift/elevator for Maria to auction off to raise funds. It looks like quite a valuable piece of equipment so I hope it fetches a good price! You can see it both in action and folded up on her Facebook page (scroll down a bit for the photos):

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

41 patients funded now! Just continues to amaze me.

I'm going to show off now, Sasha, because I've learnt how to post links to individual messages:
https://www.facebook.com/photo.php?….129283587230831.28348.125662110926312&type=1
https://www.facebook.com/photo.php?….129283587230831.28348.125662110926312&type=1

But it's easy to do…
It's exactly the same as on this forum, and on Twitter…
You just click on the time stamp (i.e. the time/day/date) for the post that you are looking at.
On facebook it's at the top of each post, just under the title.

Sasha May 25, 2013 at 3:04 am
Bob

You just click on the time stamp

Doh! o_O

Bob May 25, 2013 at 3:46 am
Sasha

Doh! o_O

:)

.

Maria Gjerpe May 29, 2013 at 12:12 pm

I´m sorry to not have time to update you, but am so thankful for your support!
Today my main goal is to get as many as possible to vote for MEandYou and enable us to win 100 000 NOK/$17 000 just by one click.

Sasha wrote about it today, and I really appreciate your votes. An animal protection organization has a lot of friends. Also a good cause, of course.

Anyways: http://forums.phoenixrising.me/inde…-win-17-000-for-meandyou-by-sat-1-june.23446/

Maria Gjerpe May 29, 2013 at 12:15 pm

And, to your questions about how the meeting with the politicians went – I´m starting posting them individually to day in blogs.
One each day.
Starting with Erna Solberg, Prime Minister Candidat, that has supported us all through the campaign. More to come.

This for today: http://www.meyou.no/erna-solberg-meandyou/

Sasha May 30, 2013 at 4:14 am

The equivalent of 43 patients funded now, by the way!

Vote right now in the new contest for MEandYou to get $17,000 if you haven't already – see my signature. And there's a thread on it here:

http://forums.phoenixrising.me/inde…-win-17-000-for-meandyou-by-sat-1-june.23446/

The contest only opened yesterday and it closes on Saturday. We're winning but we need every vote. Pile in and tell your friends!

Sasha May 31, 2013 at 6:42 am

Jorgen Jelstad just tweeted from the Invest in ME conference:

Jørgen Jelstad@DeBortgjemte

7m


#InvestME Fluge/Mella will present data from their study on maintenance therapy with Rituximab in ME/CFS. Study is finished.

Thread is here:

http://forums.phoenixrising.me/inde…n-me-conference-now-may-31.23493/#post-359166

Sasha June 3, 2013 at 8:46 pm

MEandYou has just reached the 47-patient mark! Amazing. :thumbsup:

Maria says on her Facebook page that she's extending the campaign by four days til Sunday 9 June because she's got some things to finish off. That's dedication!

Sasha June 11, 2013 at 12:41 pm

Maria just posted this question on her Facebook page:

https://www.facebook.com/MEYOU.no/posts/203903639768825

"On Thursday I'm off to Haukeland University Hospital to hand over the fund raised to Fluge and Mella. Something you want me to say from you?"

If you'd like to say something, that's the place to post it!

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