Dear Friends within the UK FOP Community
As we all know, in 2006 we witnessed the first major breakthrough in the quest for a cure, thanks to the work of International Research Team members based in Pennsylvania, USA ,The Botnar Research Centre Oxford, UK and a number of other centres in many countries worldwide. Since then this devoted network of researchers, together with many others who have now joined in, have been working tirelessly towards the next stages of discovery, and we are happy to present to you the latest progress. Exciting developments in FOP research in Oxford focussed on drug discovery and design were recently presented on our FOP ACTION UK website (http://www.fopaction.co.uk/wp-content/uploads/2011/10/FOP-Update-October-2011_v4.pdf
A further potential and exciting lead to an eventual cure for FOP is now described in the link:
http://www.ifopa.org/en/news-and-events/latest-news1.html
Whilst all these areas may provide eventual cures to reduce the heterotopic bone formation seen in FOP we must not get our hopes up too much. We are greatly encouraged by these recent important and significant steps forward in the search for a FOP cure but we must be cautious in thinking that the end is now in sight. The gene silencing technology described in Philadelphia was first discovered in 1998 and like gene therapy was welcomed as a potential blockbuster drug or magic bullet to cure all manner of disease. Many companies are still trying to develop the technology for clinical use. However, there do remain several difficult hurdles to overcome generally such as how to deliver the drug effectively, how to make the drug safe (avoiding off-target effects), and how to stop the body degrading it rapidly. The new work applying this approach to FOP is at a very early stage and should be seen as another sword in the armoury of research strategies aimed at stopping extraskeletal bone formation. Hopefully, now with 3 to 4 different lead ideas for drug development, including the presently described technology, one can make it home. We are all committed to finding the fastest, most effective and safest treatment for FOP and in the UK the Oxford group are also discussing the gene silencing technology with the drug industry.
With heartfelt thanks to: Fred Kaplan and his team in Pennsylvania U.S.A.; Jim Triffitt and Alex Bullock and their team in Oxford; fundraisers and benefactors and all research centres worldwide, and most notably for us here in the UK, Richard Simcox, who has enabled the funding of research posts at Oxford, through ongoing involvement and benefaction.
Very best wishes to you all. The skeleton key has certainly turned many notches during this decade.
This is a very promising time for all those affected by FOP. Prayers are being answered. Hopes and dreams are within nearer reach.
Kind regards
Sheryll Hadley
Chairman FOP ACTION UK”
Sincerely yours
Jim
