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!
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).
‘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.’
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.
The Rituximab Story article on Phoenix Rising
Fluge and Mella’s Rituximab study in PLoS ONE