Chris has been involved with the FOP community since his son Oliver’s diagnosis in 2009. He was one of the founding trustees of FOP Friends, after learning that there was no UK charity to support families with FOP.
FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects.
2009 seems such a long time ago when our family was given the news that our first child, Oliver, had been born with fibrodysplasia ossificans progressiva (FOP). He was just one year old at the time.
At that time there was a small patient group, FOP Action, but no UK charity dedicated to supporting FOP families and funding research.
Along with our family and friends, we ran fundraising events to support research and raise awareness of FOP. Through this, we encountered barriers to accessing further help and funding from companies and organisations, so decided to become a fully registered charity. We received full charitable status in 2012.
The Present and the Future
Since then we have continued to grow our support locally, nationally and internationally.
We have had success in grant and trust fundraising as well as increased fundraising from FOP families, friends and the public. We continue to grow and are regularly chosen as “charity of the year” by organisations when put forward. Since our charity began, we have raised over £700,000 to support the research to find a treatment and cure, and to support the families affected by FOP.
We continue to raise awareness of FOP to aid early diagnosis which can help to prevent often-devastating progression of the condition. We strive to meet our annual fundraising target, which brings its own challenges. We also work to support families living with FOP, and to continue bringing the FOP community together.
FOP Friends was founded by Chris and Helen who, when their little boy was diagnosed with FOP aged just 13 months, had no support, no information and nowhere to turn. Along with the support of their family, friends and other FOP families, they built FOP Friends into a nationally and internationally respected charity.
FOP Friends works alongside the excellent FOP team at the Royal National Orthopaedic Hospital, the FOP Research team at the University of Oxford, and other international FOP patient organisations.
Annually, FOP Friends are invited to the Vice-Chancellor’s Circle Dinner in recognition of their continued contribution to the FOP research fund at the University.
In 2017, FOP Friends were runners up in the Altrincham Chamber of Business Small Charity Awards. In 2018, Helen and Chris were recognised by 10 Downing Street as Points of Light for their volunteering efforts for FOP Friends.
In 2019, Helen and Chris received the prestigious Jeannie Peeper Award for International Leadership, in recognition of their contribution to the FOP community both in the UK and around the world.
Also in 2019, Nicky came runner up in the BBC Sussex and BBC Surrey Community Heroes Awards. Nicky and Team Isla were nominated for the Fundraiser Award, in recognition of their incredible fundraising for FOP Friends, helping us to support the research into a treatment for FOP.
Queen’s Jubilee Honours
In June 2022, Helen was honoured to receive a British Empire Medal as part of Queen Elizabeth II’s Platinum Jubilee Honours list. This was in recognition of her many years of support the UK’s FOP community.
Meet The Trustees
Alison Acosta Bedford
Alison is a Chartered Management Accountant so assists with the financial accounts of the charity, along with other administrative tasks, and supporting fundraising efforts.
Rachel is one of Oliver’s Aunties and the final founding trustee of FOP Friends. Rachel looks to use her personal drive to work hard alongside fellow trustees and the whole of the FOP Community to find a cure for FOP.
As a close friend of the Bedford-Gay family for many years, Fiona was devastated to learn about their son Oliver’s condition. She became a trustee in 2013 and has enjoyed watching the charity go from strength to strength.
When John heard about Oliver and others with FOP, he wanted to do what he could to help. As a first step, he produced a video through his creative company, claritycomms.com, engaging Stephen Fry to provide the voice over and to subsequently tweet to his millions of followers.
Mum to Oliver, Helen has been with the charity from the start. Originally taking on a ‘behind-the-scenes’ role, supporting and thanking fundraisers, developing the charity’s information, and organising fundraising activities, Helen now acts as the charity’s Communications and Fundraising Manager.
Nicky’s daughter Isla was one of the youngest children to be diagnosed with FOP. After coming to terms with the initial shock of diagnosis, Nicky began fundraising to support the search for treatments.
The charity was established initially as ‘Friends of Oliver’ by Trust Deed on the 1st March 2012. The name was changed to ‘FOP Friends’ on 25th May 2014. Click below to read a copy of the charitable trust deed.