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

As you know very important steps are taking place in the ongoing search for a suitable drug therapy, with which to halt the devastating actions of the faulty Fop gene.

With Christmas approaching, I thought this would be a good time for us to consider making donations to the Fop Research fund, instead of sending Christmas cards. The cost of cards, together with postage can be considerable. If this amount could be donated and Gift Aided, (for UK Tax Payers), the funds generated could be a tidy sum.

Further, when you are asked what you would like for Christmas, (other than a cure for Fop), perhaps instead of the dodgy Val Doonican style jumper or the perfume that smells like fly killer! – we could suggest donations for Fop Research?

This is just a thought, an idea, a suggestion. Christmas is a time for remembering and giving. It is a time for children too. Obviously, I am not suggesting our children should go without presents, but as an adult, I know I would rather have or make a donation rather than have The Gordon Ramsay cookbook or an umbrella decorated with butterflies! No offence to Gordon or the butterfly world!

It is a tough economic climate and everyone is looking for ways to make their money stretch that little bit further.

It would be good if we could all make a small sacrifice with Christmas, in order to assist the enormous goal of a cure, which we all have uppermost in our minds.

I hope you will not mind me making this suggestion. It is with the very best of intentions.

With very best wishes to everyone.

Kind Regards

Sheryll Hadley
Chairman Fop Action

Hi,
Each year my family and I also donate to FOP research instead of sending Christmas cards and are going to do the same this year, please let us know if anyone would like to do the same and we will let you know how much we raise together.

Best Wishes
Kelly Sanderson

Three of Seanie’s teachers did a bike ride from London to Brighton during the school summer holidays, orignially as the newspaper shows there were only two doing the fundraiser, Seanies RE teacher Simon Lowe and her Art teacher Alison Mure. Her other art teacher Michelle Nadji joined them on the day also. Monies are still coming in will let you know how much we raise for Oxford once its all there.

Marian
http://kensington.londoninformer.co.uk/2011/07/teachers-cycle-towards-a-cure.html

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A big thankyou to Warren Whittaker who did a Manchester to Blackpool bike ride for fop research. Thanks for helping such a rare disease every penny helps.

Please keep sending pictures in everyone, if anyone would like help with fundraising please get intouch.

Great to see all the FOPACTION t-shirts. If anyone would like to order some please get in touch through the contact page.

Here is Jasmine in the daily star too