FOP Friends Blog

We are excited to introduce FOP Friends' first employees: David Pilkington and Mari Jones.

Funded for 12 months thanks to the support of GDUK, along with other minor grants, their combined skills will make a formidable team to help the charity grow.

Until now the charity has been run solely by the charity trustees on a volunteer basis and we hope the addition of David and Mari will help us meet our annual fundraising targets and reduce some of the volunteer workload. 

David Pilkington started working as our new Grants & Trusts Manager in August. David is a graduate from the University of Dundee with a degree in Philosophy and Economics. His career has included appointments in companies and public bodies.

In the charitable sector he has experience of acting as Chair and Trustee with particular responsibilities for strategic planning and fundraising through charitable trusts and HMG sponsored organisations and departments. Since joining FOP Friends he’s been amazed and impressed by the commitment and imagination of our FOP families and their supporters towards fundraising and the dedication of both families and clinicians to finding a  cure for FOP.

He says that he is determined not to let the side down and keep up a steady stream of hopefully persuasive applications to help raise awareness of FOP and sustain our ability to fund FOP research every year.

David is married with four children. He lives in Altrincham just a short drive to the FOP Friends office or should that be a bike ride? The possibility is a work in progress, he says.

My name is Mari Jones and in August I started working as FOP Friends Fundraising and Medical Liaison Officer. Having graduated with a degree in Genetics in 2014, people might expect that I would know about Fibrodysplasia Ossificans Progressiva (FOP). In reality, like many others, I had not even heard of FOP. Affecting 1 in 2 million people worldwide, FOP is one of the rarest genetic conditions known to medicine. Raising awareness of FOP with medical professionals and with the public will therefore be a critical part of my role and I will also provide support for FOP Friends fundraisers.

I have experience working in the pharmaceutical industry and at university laboratories researching drug targets for diseases, with similar approaches to FOP research. My previous charity involvement includes volunteering at the Royal Manchester Children’s Hospital and with the elderly at a community centre. In my spare time I enjoy hiking, singing and spending time at my parent’s farm in Wales.

When I first came across FOP Friends I was blown away by how far the charity had come since establishment in 2012 and am committed to working with the FOP Friends trustees to ensure the charities future development and success. 
Mari Wyn Jones
Wednesday, 4 November, 2015 - 11:31

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

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

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

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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