15 Apr 10

FOP sufferer Seanie Nammock (left) and her mother Marian Granaghan

Pioneering Oxford research into a devastating genetic disease that turns muscle into bone has been boosted by a £110,000 donation from a Scottish businessman.

The gift, from Richard Simcox, via his Aberdeen-based chemical company Roemex Ltd, will support the creation of two postdoctoral research posts at Oxford, focused solely on research into Fibrodysplasia Ossifcans Progressiva (FOP).

Roemex Ltd founder and managing director Mr Simcox chose to donate to Oxford because it is the only institution in the UK conducting research into the rare disease and played a vital role in the discovery of the gene that causes it.

And the generous donation takes the total now raised for Oxford Thinking beyond the £800 million milestone.

Mr Simcox first learnt about FOP from his wife Gail, who worked at a nursery school attended by a child suffering from the disease.

He has since been committed to supporting research into the condition and is currently president of FOP Action, a forum for those with the disease.

And, as part of his donation to Oxford, Mr Simcox has also guaranteed to underwrite the remaining £220,000 cost of the three-year research posts.

'I am delighted to see something happen in FOP on these shores,' he said.
'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.'

University Vice-Chancellor Professor Andrew Hamilton, said: '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.'

FOP affects only 600 people in the world – with about 45 known cases in the UK - and forms an extra skeleton that imprisons the body, making it impossible to move.

The research at Oxford could end up benefiting people like 14-year-old Seanie Nammock, from West London.

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

Mrs Granaghan 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 research at Oxford.

Those wishing to give to the University of Oxford can go to the Campaign website's Ways to Give page.

Those wishing to donate to FOP research at the University of Oxford can go to the relevant Giving page.