Without the support of businessman, Richard Simcox, it is hard to imagine where the funding for FOP research would have come from in the last decade. Acting as one of the world's leading FOP philanthropists, Simcox has donated hundreds of thousands of pounds to support the only FOP research in the UK at the University of Oxford.
Simcox has championed and funded FOP research for almost 20 years, first becoming aware of the condition through a young boy living with FOP near his home in Aberdeenshire. He then decided to sponsor a fellowship in FOP research at the University of Pennsylvania in 1999, after a meeting with Dr Fred Kaplan in Aberdeen. This was soon followed by a PhD scholarship at the University of Aberdeen and subsequently grants at Oxford University to support Professor James Triffit's research into FOP.
Since then, there has been some incredible advances in research, as Richard himself describes:
'The most exciting development in the research since I've been involved has to be the 2006 discovery of the causative gene.'
Whilst most of the research to identify the FOP gene had been carried out at the University of Pennsylvania, Simcox had also been sponsoring work at the University of Oxford since 2003. Oxford's Matthew Brown and James Triffitt were collaborating with the team in Pennsylvania and narrowed down the mutant gene's location to a small region on chromosome 2. Previously, it had been thought that chromosome 4 was the most likely location. Given that our 46 chromosomes collectively contain approximately 25,000 genes, knowing which chromosome to search and precisely which location on it to search was critical. Soon after this discovery in Oxford, the AVCR1 gene was identified.
With the gene that causes FOP now identified, research could focus on developing a cure, and in 2010 Simcox covered the cost of setting up two dedicated FOP research posts at the University of Oxford. FOP Friends, to this day, continues to raise funds for these posts.
To help make sure we find a cure, Simcox has just helped to fund a scholarship at Oxford to support a PhD student working on FOP research. The 'Oxford-The Simcox Family Graduate Scholarship' is in memory of Richard's mother, Constance Mary Simcox nee Killingback. Simcox explains why:
'We all love our mothers but mine was really special. She gained a first class honours degree in biology at Imperial College, London, and was doing work on tropical diseases when she married and had my sister and me. She was unable to continue the research work she was doing, but I vowed to myself that I would somehow pick up the medical research baton and run with it on her behalf. So, when I became involved with FOP research, it was the ideal way for me to achieve this ambition. That is why the Deed of Gift is dedicated to her'
FOP Friends and the UK FOP community are extremely grateful for the continued support Simcox offers to find treatments/a cure for FOP.