FOP Friends Blog
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On Sunday 22nd March in McQs Bannockburn, a ladies lunch fundraiser was held for FOP Friends of Dylan.

On the day two local girls entertained the crowd. Megan Adams (11) sang a selection of songs and Stephanie Hamilton (13) preformed a selection of very different dances.  Both girls were excellent and captivated the audience.  A very big thank you to both. A big thank you also to our two waiters Graeme and Neil.

Finally a special thank you to Carol and Tom for all your help and to all who donated raffle prizes and came along to support the event.  In total £3000 was raised.  

Chris Bedford-Gay
Thursday, 22 October, 2015 - 22:15
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It has been a hard year for fundraising but thanks to all the FOP Friends, their families and supporters we are delighted to announce we have donated an impressive £70,000 to support the fantastic FOP Research Team at the University of Oxford.  This, together with donations direct to Oxford from FOP France and via FOP Action, puts our annual target of £125,000 within reach.

It is the annual commitment to raise £125,000 by FOP Friends, FOP Action, FOP France and others that allows the FOP Research Team to continue their search for a treatment and a cure for FOP. 

Amazingly, this latest round of funding by FOP Friends means that in the two years since becoming a fully registered charity, we have provided over £165,000 to support FOP research in the UK.  This wouldn't have been possible without the tireless fundraising of our small FOP community. Everyone one of you has made a difference.  We just need a final push to meet our 2014 fundraising target...

We also hope you all have your fundraising thinking caps on for 2015 because we can't do it without all of your continued support, for which we and the entire FOP community are enternally thankful.

Chris Bedford-Gay
Tuesday, 14 October, 2014 - 12:43
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You will remember in March we announced our success in securing funding of £65,000 for a Senior Medicinal Chemist to start work with the FOP Research team at the University of Oxford. The chemist will have the challenge of taking the Oxford FOP Research Team's drug designs and turning them into optimised drug candidates.

Well we are excited to announce (a little late) the employment of Dr Aicha Boudhar who was selected from over 60 applicants.  Dr Boudhar will be working closely with Dr Paul Brennan and Dr Alex Bullock on creating new drug candidates in the search for possible treatments for FOP.

Dr Aicha Boudhar received her training at the University of Strasbourg before undertaking a position at the National University of Singapore working on medicinal chemistry for anti-malarial compounds. She has also gained industrial experience through several internships. She joined the University of Oxford FOP Research Team on Monday 18th August and will be directly supervised by Dr Paul Brennan with additional project supervision from Dr Alex Bullock. Her chemistry work will be undertaken alongside other members of FOP research team in the in the chemistry laboratory in the newly opened Target Discovery Institute in Oxford.

Dr Paul Brennan received his training at the University of California, Berkeley and undertook his first academic position at the University of Cambridge in the UK. Subsequently, he gained significant experience in the drug industry at Amgen and Pfizer, including work on kinase inhibitors relevant to FOP. Following the closure of the Pfizer site in Sandwich, Paul joined the SGC consortium at the University of Oxford where he works closely with the current University of Oxford FOP Research Team.

Dr Boudhar will also be joining Dr Bullock, Professor Triffit and Chris Bedford-Gay at the IFOPA organised FOP Drug Development Forum being held this Novemeber in Boston.

Chris Bedford-Gay
Tuesday, 7 October, 2014 - 12:32
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Thank you to everyone who attended or was involved in making the 2014 UK FOP Family Gathering a great success.

Twelve years after the first ever UK event, FOP Action held a conference and family gathering for families from across the country and the globe. The event was organised by FOP Friends, the UK charity for FOP, headed by Chris Bedford-Gay. Assisted by a grant from Genetic Disorders UK, the aim of the event was to gather together families of FOP sufferers in a relaxed environment allowing them to meet others living with the same circumstances. The reality turned out to be much more.

After a year of planning, the event started in the early hours of Friday morning with Drs. Kaplan, Pignolo and Shore flying into Manchester, England. They ran clinical appointments all day long, meeting many patients, some who they had met previously, others new – all overwhelmed at meeting their ‘heroes’. The waiting area overlooked a sunny, yes sunny, Manchester Airport and the atmosphere was happy and hopeful. Behind the scenes, the FOP Friends team were busy getting ready for the evening’s meet and greet reception as well as preparing for the following day’s conference sessions. At 7pm, families gathered for the reception with attendees coming from, amongst other places, the UK, Sweden, Greece, Malta, the Netherlands and even South Africa and Australia. The hour-long reception ended when the bar closed three hours later!

Saturday dawned and the families gathered. A crèche was provided for the young children which proved to be a real hit! Staffed by qualified teachers, the children had a great time playing and meeting each other and particularly enjoyed the trips to the hotel penthouse to see the planes taking off! The crèche enabled the parents to enjoy the conference, taking the time to listen to the presentations and meet other parents to have great conversations. The presentations were given by doctors and researchers from the Universities of Oxford, England, and Pennsylvania, USA as well as IFOPA and Clementia Pharmaceuticals. Delegates had the opportunity to ask questions of all the speakers in the afternoon which was extremely well received. The families had different levels of understanding of FOP, depending on when they received a diagnosis, and the doctors and researchers were able to answer all questions. News of Clementia’s clinical trial provided real hope for the sufferers and their families, many hearing about this for the first time. The day was topped off by a dinner and quiz, which ended with an unexpected karaoke round, creating some fun competition – Dr Christiaan Scott from South Africa was the unexpected star of the night! There was no rest for Drs Kaplan, Pignolo and Shore who ran clinical appointments all day Sunday.

The feedback from the three day event was overwhelming with the most frequent comment being ‘When is the next one?’!  Lasting friendships were made and many delegates received support they didn’t know existed. Tears were shed and hugs were exchanged: the FOP community came together in spectacular style!


Chris Bedford-Gay
Sunday, 8 June, 2014 - 23:48
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In the middle of 2013 Chris Bedford-Gay (founder) and John Lever (trustee) of FOP Friends of Oliver successfully applied to a medical trust for £65,000 to fund the employment of a Senior Medical Chemist (and equipment) at the University of Oxford. 

The chemist will have the challenge of taking the Oxford FOP Research Team's drug designs and turning them into optimised drug candidates.  The trust awarded £35,000 towards the post, conditional on the commitment of an additional £30,000 from another party.  We are thrilled to announce the second £30,000 was secured early in 2014 and on the 5th March 2014 a total of £65,000 was transferred from Friends of Oliver to the FOP Research fund at Oxford.  The search for the chemist can now begin.

This photo shows the lab where our chemist will spend their day, building drugs in the hope of finding a treatment and ultimately a cure for FOP.  Excitingly, this chemist will join the exisiting excellent FOP research team at Oxford who still need our £125,000 to continue with their groundbreaking work. We look forward to providing you with full details in the near future, and to let you know when a chemist has been appointed.

Chris Bedford-Gay
Thursday, 6 March, 2014 - 23:34


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