If it works for neuroendocrine cancers, then the virus could possibly be adapted for other cancers – but it would need to go through further trials to see if also worked against other types of tumour.
Until the drug is proven to work using the accepted method of clinical trials, we have to be very cautious about any claims.
All we can say is that the pre-clinical work so far looks promising.
Yes. Uppsala University is one of the leading medical research institutes in the world and a European Centre of Excellence for the treatment of neuroendocrine cancer.
Professor Kjell Öberg, the clinician now running the trial, is a former President of the European Neuroendocrine Tumour Society (ENETS).
Pre-clinical results have been published in peer-reviewed journals, and the clinical trial now underway has had to get over all the usual, rigorous ethical and regulatory hurdles, which ensure that the scientific research and trial design are of good quality.
Yes. However, at this time they feel unable to help.
Thanks to your contributions the iCancer clinical trial has begun this month.
The Financial Times recently declared it the most successful crowdfunded medical trial ever. The campaign went global and viral and trended on Twitter – as we hoped and intended.
As we reported Vince Hamilton, having seen the publicity around the campaign, stepped forward and made up the funding gap.
The potential treatment, an oncolytic virus for neuroendocrine tumours which (potentially) targets and destroys the cancer cells and amplifies the anti-cancer cell immune response, is named Advince, in honour of Mr Hamilton.
The trial is a phase I/II trial focused on safety.
We simply cannot thank you enough.
Without you all this trial would not be taking place. And a potential life-saving treatment would still be sitting on the shelf in a freezer in Sweden.
Please stay tuned for further updates (including a film of the first patient) over the coming weeks.
Pharmaceutical companies are interested in research only when it looks likely it will produce a profit.
This research is some years away from that at this stage. In addition, neuroendocrine cancer is comparatively rare, so the market for the new drug is not huge. This will never be a blockbuster drug. Also, the Swedish research team placed much of their research in the public domain, in order to help others with their research.
This act of altruism has meant that the Swedish team is unable to patent their research. This, in turn, makes it less attractive to pharmaceutical companies, especially at this early stage.
The Swedish team has received grants from Swedish government funding and the Swedish Cancer Society (equivalent to Cancer Research UK). The grants cover the research to develop viruses for therapy but they are not big enough to run clinical trials with an advanced medicinal product where special rules apply (viruses falls under this category in Europe).
No. The people behind the fundraising campaign know nothing about medicine. We raised the money for the experts at Uppsala University because we thought that their promising treatment should be given a chance.
We rely on expert advice from medical professionals around the world. Every thing we do and write is checked and double-checked by doctors and researchers who are leaders in their fields.
iCancer has run a collaborative campaign, bringing ordinary patients and their families together with an international group of top scientists and pharmaceutical experts, in order to get a promising, yet abandoned drug tested in human trials.
What started with a random group of people, brought together by the power of a good idea has culminated in the first campaign to crowdfund £2million for scientific research.
The iCancer campaign, started by author Alexander Masters, launched on October 5th 2012 to a storm of global publicity across social media, newspapers and online media.
Within four months we had raised £200,00 with donations coming from 4,000 people from Costa Rica, Thailand, Hong Kong, USA and more.
The campaign caught the eye of Vince Hamilton, an oil man, who has donated roughly £1.8million bringing our campaign to its goal of £2 million.
Like us, everybody who donated wanted to put people before profit. And every single donation, every tweet and Facebook share has helped us spread the word, secure more publicity and ultimately reach our goal.
We cannot thank you enough.
The full story was printed in the Telegraph today: http://bit.ly/12w1Vjf
By Glenda Cooper
In 2012 Dominic Nutt – Glenda’s husband and Gareth’s brother-in-law – was diagnosed with neuroendocrine tumour. You can read about his story here.
We decided we wanted to do something to help.
So on 17 March 2013, we will both be running the Liverpool Half Marathon in aid of iCancer. We want to raise as much money as possible – so please sponsor us using the donation buttons on the side of the page.
Once you have donated leave a comment for Glenda and Gareth below.
Dom has been really lucky – he’s had excellent care at St George’s Hospital, London. We wanted to say thank you for that, and raise mone . At present there isn’t a cure for neuroendocrine tumour, apart from surgery and it doesn’t respond to chemotherapy or radiotherapy. Also because it is relatively rare, it doesn’t attract the same type of funding as better known cancers.
Sponsoring us is simple, fast and totally secure. It’s also the most efficient way to sponsor us as iCancer will receive your money faster.
‘Anyone who knows the Coopers knows we are pretty competitive,’ says Glenda, ‘so to add a bit of spice to the run – and to make sure I get out training in this cold weather, I’ve decided to do the following…
‘For every minute that I run the race either over or under 2 hours, I’ll add 1% of the sponsorship money I raise
‘Gareth has said he’ll do 2%! he’s trying to make me run even harder….!
‘So get out there and sponsor us – and make sure you let us know in the comments below how much you’ve given.
‘We have partnered with a US and UK charity to enable people to a make a tax-free donation and, if you are a UK taxpayer, an extra 28% in tax can be added to your gift at no cost to you through Gift Aid.
‘We’ll be tweeting updates at @glendacooper and @GCoops83 and updating the iCancer Facebook page.’
Firstly we want to say a HUGE thankyou to everybody who has supported and donated to the iCancer crowdfunding campaign. What an incredible few months it has been!
Today (February 14th 2013) our crowdfunding campaign comes to an end and we’re really excited to announce that the combined donations through both indiegogo and direct donations to the University we have reached a total of $258, 508.
We simply cannot thank you enough.
We haven’t reached our goal yet – but even though the crowdfunding campaign has come to an end our campaign to raise the money hasn’t.
We have been working hard behind the scenes and we are now able to channel donations through two charity organizations. The American Friends of Uppsala University in the US and the Anglo-Swedish Society in the UK. This will give US and UK tax payers the possibility to receive tax deductions when donating to the campaign.
So what happens next? And what happens to the money raised so far? Prof Magnus Essand, virus creator from Uppsala University has answered all your questions below.
What will happen to the money raised so far?
Since iCancer was launched, so far we have raised an incredible $258, 508 via indiegogo and direct to the university.
We intend to use the money for a phase I clinical trial for patients with neuroendocrine tumours (NETs) using our neuroendocrine-specific virus.
We have drawn up a detailed budget and worked out we will need approximately £1,500,000 to be able to produce and test a clinical grade batch of the virus and perform a clinical trial for 20 NET patients.
The amount we have raised through crowd funding is fantastic and we are currently discussing with a potential donor to “fill in” what is missing to reach 1.5 million British Pounds.
We have also discussions with two other persons who might contribute larger amounts of money to the campaign. Please watch the iCancer website for more developments as soon as we can announce them…
The money raised so far is not enough for a clinical trial. What are you doing to further raise the funds?
We are channelling donations through two charity organizations (the American Friends of Uppsala University in the US and the Anglo-Swedish Society in the UK) in order to give US and UK tax payers the possibility to receive tax deductions when donating to the campaign.
We are planning a big event in London on the 5th March at the Swedish Embassy to further promote the campaign to donors.
We are also really pleased to announce that lots of people are still holding fundraising events to do all they can to raise money for iCancer.
What will happen if the funds are never raised?
We are confident that we can raise the funds. We have set ourselves the goal to raise the money needed during the entire year of 2013. The money will be kept in a secure account and will not be touched until we have obtained sufficient funding to go ahead with the clinical trial.
If for some reason we are not able to reach the goal and not get sufficient funding to conduct a phase I clinical trial, the money will still be spent on research for neuroendocrine tumors aiming at reaching benefits for NET patients. The main objective within this research program at Uppsala University is to develop new treatments for neuroendocrine cancer based on virotherapy and immunotherapy.
Finally…we want to say thank you
On behalf of all the iCancer team, and our team at Uppsala we want to say how inspired and touched we have been by the very generous donations that so many people have given.
From £5 to £5,000, every donation has made a difference. There’s been no budget, no rock concert, no celebrities like you usually see in fundraising – but this amazing amount has come in just by ordinary people giving money themselves and asking their friends.
This has not only raised a staggering amount so far -and has made it possible for us to go to other places for donations as a result.
We can’t say thank you enough.
We look forward to updating you on the work that we are doing to try to combat NETs – and to let you know about the trials.
Watch this space!
The press coverage for iCancer has been phenomenal. With everybody from The Telegraph to The Financial Times to social media giant Mashable, to being nominated for Digital Campaign of the Week by Third Sector.We have added all the links below.
The Telegraph: The virus that kills cancer: the cure waiting in the cold.
The Telegraph: The cancer killer they won’t pay for
The Telegraph: Author appeals to Apple to fund cancer hope that could have save Steve Jobs.
The Telegraph: Dominic Nutt asks, ‘What price a life
The Irish Independent: A cheap and effective cancer treatment: so why is it sitting in a freezer in Sweden?
BBC Radio 4: Today programme debate with Magnus Essand. Saturday 1st September. (Sadly the link is now dead).
The Financial Times: Scientists offer to name cancer drug for 1 million (you need a subscription to read this)
The Financial Times: Science goes viral.
Macworld: Appeal for Apple to fund research into cancer that killed Steve Jobs.
Businessweek: Author tries raising money for cancer cure.
Mashable: iCancer Takes On Disease That Killed Steve Jobs
The Guardian: Blog: iCancer: closing the net around cancer by getting the public involved
Third Sector: Digital campaign of the week.
The Yorkshire Post: Cancer campaigners go viral.
The Metro: the UK’s daily newspaper.
The Drum: iCancer campaign aims to raise £2 million for cure to NET cancer which killed Steve Jobs