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Oxford reaches £800m fundraising landmark with donation for research into a disease that turns muscle to bone

14 April 2010

A donation that will establish a UK research group dedicated to work on a rare genetic condition that turns muscle to bone has taken the University of Oxford’s fundraising campaign, Oxford Thinking, past the £800m mark.

Oxford Thinking: The Campaign for the University of Oxford is the largest fundraising campaign in European university history, with a goal of a minimum of £1.25 billion to support world-class research, teaching and facilities.

Donor Richard Simcox chose to donate to the University because it is the only institution in the UK which researches FOP. Fibrodysplasia ossificans progressiva, or FOP, is a progressive disease in which new bone forms in muscles in the body. It is a very rare condition with no cure. There are about 45 known cases in the UK [see case study of one 14 year-old patient below].

The donation takes the Oxford Thinking campaign over £800m, under six years after fundraising began.

FOP patients become gradually more disabled as extra bone forms across joints, restricting movement and locking joints in place – sometimes in uncomfortable positions.

Richard Simcox’s donation, via his company Roemex Ltd, will fund the first dedicated UK programme to study the gene responsible for FOP and how drugs can be developed to halt or prevent the disabling bone formation.

Professor Andrew Hamilton, Vice-Chancellor of Oxford University, says: ‘Richard Simcox – like so many other generous donors – identified Oxford as the best place to address the challenge that mattered to him: finding a cure for a devastating disease. His generosity takes our fundraising campaign past the £800m milestone, and this funding will allow us to invest in a whole range of research that tackles the pressing needs of the 21st century and advances human knowledge. It will also help support and teach the brightest minds of the next generation.

‘To have raised £800m in under six years, in a difficult economic climate, is testament to the extraordinary generosity of Oxford’s donors, and their faith that this University is capable of tackling the issues most important to them.

‘We are grateful to the thousands of alumni, individuals and foundations who have chosen to support our work. They come from 80 different countries, and have made gifts from a few pounds to tens of millions. Every single gift helps us achieve something different and important, as Richard Simcox’s donation so amply demonstrates.’

Marian Granaghan, mother of Seanie Nammock, 14, who has FOP [see case study below], said: ‘The donation is great news. Every morning on the news there are unbelievable breakthroughs in the field of genetics. The research at Oxford offers a chance there might be one in FOP in the future to help Seanie and others affected by FOP.’ Marian, Seanie, and their family and friends have separately raised £15,000 for Oxford research.

Richard Simcox, the donor, is founder, managing director and main shareholder of Roemex, a firm based in Aberdeen that supplies speciality chemicals to the oil and gas industry. He is also president of Action FOP UK, a forum for those with the condition. He hopes that his donation will raise awareness of the rare condition and stimulate further gifts and fundraising efforts. He says: ‘I am delighted to see something happen in FOP on these shores. At Oxford, we’ll be able to get something going, something real and tangible. Now that the gene for FOP is known, researchers can focus on looking for a cure.’

Professor James Triffitt of the Botnar Research Centre at Oxford University, who researches FOP, says: ‘It is very difficult to get research grants to study rare diseases, so the generosity of individual donors is what keeps work like this going.

‘This donation will make a great difference. It will create a research nucleus in Oxford to understand the changes that occur in FOP and search for potential therapies. Without it, it would be impossible to have this intense research activity on FOP, one of the most disabling conditions that any patient can get.’

Dame Vivien Duffield, Chair of the Campaign, commented on Oxford reaching £800m: ‘We are delighted that the campaign has reached £800m which is even more remarkable during a period of such economic uncertainty. I would like to thank everyone who has given so generously towards the campaign which will help to secure the future of the University for generations to come. We still have a long way to go to reach our target but we hope that future donors will be spurred on by the wonderful example of our benefactors to date.

’For more information please contact the Press & Information Office, University of Oxford on +44 (0)1865 280530 or press.office@admin.ox.ac.uk.
 
CASE STUDY
Pictures are available to download at http://www.ox.ac.uk/media/news_releases_for_journalists/100414.html or from Oxford University press office.

The FOP research now being funded as part of the Oxford Thinking campaign could end up benefiting people like Seanie Nammock, 14, of West London.

Since her diagnosis with FOP in September 2008, she and her mother Marian Granaghan have been tireless in raising awareness of the condition and helping to raise funds for research at Oxford.

Seanie Nammock is 14 years old. She likes make up, clothes and loves cooking. She listens to Lady GaGa, Beyonce, and Lily Allen and is to be a bridesmaid at her cousin’s wedding. She’s done one of her Science GCSEs two years early and dreams of being a vet.

In the summer of 2008, Seanie had a minor accident on a trampoline. A couple of weeks later, a large lump developed on her back. After a lot of going back and forth to the hospital, she was diagnosed with FOP in September 2008.

Seanie says, ‘When I was eventually told what my condition was and what the outcome could be, I just thought “Oh well, I just have to get on with my life and I won’t let it stop me from doing what I want.”’ Her neck now has little movement and her left and right arms have locked, restricting what she is able to do.

‘I can’t brush my hair and style it anymore, and my mum is pretty rubbish at doing it!’ says Seanie. ‘My mum also helps me to get dressed.

‘Sometimes I do get fed up when I can’t do things but it normally doesn’t last too long. You just have to find ways around things or just ask for help.’

Marian Granaghan, Seanie’s mum, describes how she felt when they received the diagnosis of FOP: ‘I feltnumb. I just went onto autopilot. The hurt and grief was indescribable – it was a pain worse than anything I’d ever felt in my life.

As time has passed, she says she’s gained more acceptance of the situation. ‘Our lives have changed, so we have to get on with it as best we can. We live for each day and I try not to think too much about the future.

‘Seanie on the other hand has been amazing and accepts this has happened to her. She feels she should be able to do whatever she can for herself, and she keeps telling me “You have to let me get on with things, if I want help I’ll ask for it.

Like many people affected by FOP and their families and friends, Seanie and Marian have focussed on raising awareness of FOP and raising funds for research at Oxford University. They talked about their story in the media in April last year and they have succeeded in raising £15,000 for Oxford.

Marian says, ‘I am constantly thinking of things we can do or people we can contact to raise money for research, because this condition is so rare it is down to the families and friends to help raise funds so research can be ongoing.

This is my dream: one day there will be a cure or, if not a cure, a tablet that stops bone growth. This would mean that Seanie and everyone affected with FOP can be operated on and the excess bone taken away to get their movement back.’ 

Notes to Editors

  • Oxford Thinking, the Campaign for the University of Oxford, is the largest fundraising campaign in European university history and one of the largest in the world. It has a minimum goal of £1.25bn and has three key aims: supporting students, supporting academic posts and programmes, and supporting buildings and infrastructure. It includes all the colleges, departments, and museums of Oxford University, and the total raised to date is over £800 million. The Campaign began its ‘quiet phase’ in summer 2004 and £575 million had been raised by its official launch on 28 May 2008. www.campaign.ox.ac.uk
  • Those wishing to give to the University of Oxford can go to www.campaign.ox.ac.uk. Those wishing to donate to FOP research at the University of Oxford can go to http://www.giving.ox.ac.uk/academic_departments/medical_sciences/fop_research.html
  • Richard Simcox has given £110,000 towards two postdoctoral positions working on FOP, and has guaranteed to underwrite the remaining £220,000 cost of the three-year research posts. This creation of two research posts at Oxford University establishes a UK group focused solely on this condition for the first time.
  • Richard Simcox is founder, managing director and main shareholder of Roemex, a firm based in Aberdeen, Scotland that supplies speciality chemicals to the oil and gas industry. He is also president of Action FOP UK, a forum for those with the condition. He first took an interest in FOP around 15 years ago when he became aware of two children with the condition in the north-east of Scotland. He is now in a position to be able to support the creation of two research posts at Oxford University, establishing a UK group focused solely on this condition for the first time.
  • In FOP, the formation of new bone in skeletal muscle tissue around bones and joints often follows inflammation as a result of injury or trauma. The joints can then become locked in place with the newly formed bone tissue. Patients become more and more disabled, often becoming completely immobilised in mid-life.

    No one knows why inflammation or ‘flare-ups’ in FOP patients leads to bone formation. And immobilised joints can’t be released – any surgery would exacerbate the condition. The only treatment – other than trying to avoid injury – is corticosteroids, which appears to help in the early stages of FOP. It doesn’t stop progression of the disease but may ameliorate the condition.

    More information about FOP and Action FOP UK can be found at:http://www.fopaction.co.uk/
  • In 2006, Professor Triffitt and colleagues at Oxford were part of an international collaboration that identified the gene responsible for FOP, working with families who had the disease in the UK. The gene appears to be important in cellular processes that lead to bone formation, but are also important in initial embryo development. In FOP, a mutation turns the gene on which leads to the unwanted bone formation.

    Since the gene was identified, there has been significant research progress. The gene encodes a protein which is involved in a number of processes in cells in the body that eventually lead to bone formation. It has been shown in mice that it is possible to stop the action of the protein. The two new researchers at Oxford will start projects to understand the structure of the protein, how drugs can be best designed to stop its action, and carry out the cell biology necessary to test whether any new, early-stage drug candidates are working in the right way.

    Dr Alex Bullock of the Structural Genomics Consortium at Oxford University, who will be supervising the new research projects along with Professor Triffitt, explains: ‘The difficulty is that the protein involved is only one of 500 similar proteins in humans, and we want to affect this one and only this one. That’s the challenge.

    He adds of the donation: ‘The money is allowing us to look in depth into the workings of this altered gene. We definitely wouldn’t be able to undertake this work without this support.’
  • The Structural Genomics Consortium (SGC) is a not-for-profit organization that aims to determine the three-dimensional structures of proteins of medical relevance, and place them in the public domain without restriction. Its overarching aim is to provide tools and reagents to enable biomedical research and drug discovery. The SGC operates out of the Universities of Oxford and Toronto and Karolinska Institutet, Stockholm, and works on structures of human proteins associated with diseases such as cancer, diabetes, inflammation, and genetic and epigenetic diseases, as well as proteins from human parasites such as those that cause malaria.

    The Structural Genomics Consortium is a registered charity (number 1097737) that receives funds from the Canadian Institutes for Health Research, the Canadian Foundation for Innovation, Genome Canada through the Ontario Genomics Institute, GlaxoSmithKline, Karolinska Institutet, the Knut and Alice Wallenberg Foundation, the Ontario Innovation Trust, the Ontario Ministry for Research and Innovation, Merck & Co., Inc., the Novartis Research Foundation, the Swedish Agency for Innovation Systems, the Swedish Foundation for Strategic Research and the Wellcome Trust. 

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