News

We would like to thank everyone who helped to fundraise for the FOP Research Fund at the University of Oxford in 2010. We are extremely grateful for the funds raised by patients, friends and families through FOP ACTION UK. Research into FOP receives very little support from public funding agencies because it is such a rare disorder, affecting few than 40 people in the UK. Without your support, FOP research at Oxford would not be possible.
In 2011, we will continue our efforts to better understand and eventually treat this devastating condition. With two new researchers now in post (thanks to the very generous donation from Mr Richard Simcox) we hope to push our research forward and advance our knowledge to help FOP patients both in the UK and around the world.
We look forward to keeping you informed of our progress during the year ahead and wish you all a very happy 2011!

Professor Jim Triffitt, Dr Alex Bullock and the research team at Oxford

As Christmas approaches, it always good to reflect on what’s been happening during the year. It’s very good this year as there has been a lot of activity as reported on the FOPACTION website which is working well; many thanks for your efforts on that. The research effort continues to run at a pace both in Philadelphia and Oxford, and progress will be swifter from now with the two new posts at Oxford. These people are working at the cutting edge of science on a very tricky project, but they are highly qualified and have state-of-the-art equipment and facilities, and will be collaborating with The University of Pennsylvania, where FOP research has been ongoing for nearly two decades. I’m sure they will be equal to the task, and we look forward to hearing progress reports in due course. This effort needs financial support as well as some FOP families, and I would like to thank everyone who has donated funds to FOP this year; contributions are much appreciated by all those concerned. I would also like to thank the ACTION FOP UK Committee and helpers for all their efforts and indeed everybody who has helped lighten the FOP burden.

Wishing you all a Merry Christmas,

Richard Simcox – President, ACTION FOP UK

Please see the following link itvplayer

Please tune into ITV1 on the 25th of November at 9:25 am

This is a fantastic way to raise awareness for Fibrodysplasia Ossificans Progressiva. Rachel was misdiagnosed and FOP is often misdiagnosed with diseases such as Cancer, Aggressive Juvenile Fibromatosis and Fibrous Dysplasia Cancer.