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FOP Friends, the only UK charity that aims to raise awareness and funds for Fibrodysplasia Ossificans Progressiva (FOP), is delighted to announce that we have successfully secured a grant from Genetic Disorders UK to part-fund our 2019 Respite Family Weekend Break. We are one of 25 charities who were lucky to receive this generous donation. 

This funding, along with other grants from The Percy Hedley Foundation, The Bruce Wake Charitable Trust and The Adamson Trust, means that we have organised an outdoor activity weekend especially designed for FOP children, to encourage them to take part in activities they may never have had the opportunity to try before. 

The weekend will take place on the 15th - 17th March and we will be staying at Center Parcs, Sherwood Forest, Nottinghamshire; a prime location for travel across a wide geographic area. Center Parcs boasts a variety of activities to suit children of all ages including the subtropical swimming paradise, soft play areas, craft activities and treasure trails. 

This fun-filled weekend will give our children the opportunity to come together and try exciting new activities in a relaxed and safe setting, and should build their self-esteem and confidence. The Activity Weekend Break also offers a welcome opportunity for parents and family members to meet, share experiences and spend quality time together in an enjoyable environment. 


What is FOP?

FOP, Fibrodysplasia Ossificans Progressiva, is one of the rarest, most debilitating conditions known to medicine, where muscles, tendons and ligaments turn to bone eventually imprisoning the body in a second skeleton. There is currently no approved treatment or cure, and the average life expectancy is only 40-years-old.

Watch our video narrated by Stephen Fry 

About FOP Friends

FOP Friends, originally Friends of Oliver, was founded by Chris Bedford-Gay in 2009 after receiving the devastating news that his son, Oliver, had FOP. With FOP being so rare (only 55 known cases in the UK), at the time of Oliver’s diagnosis there was no UK charity dedicated to raising funds for research into effective treatments and a cure. Friends of Oliver was originally set up with the goal to fundraise amongst the Bedford-Gay's family and friends, and raise the £120,000 per annum that is needed to sustain the FOP research team at Oxford University. As these fundraising and awareness efforts began to build momentum, more families living with FOP began getting in touch and the charity grew. Due to the increasing demand to maintain the Oxford research team, and the realization of the need for vital support for UK FOP families, charitable status was pursued in order to apply for grants and boost donations. Despite the amount of paperwork required, this was selflessly completed, with Friends of Oliver evolving into FOP Friends, and becoming an official registered charity on 15th June 2012. 

About Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. While individual genetic disorders are rare, it is thought that there are currently more than 6,000 diagnosed disorders and new disorders are being identified every day. It is estimated that 1 in 25 children is affected by a genetic disorder. This means that in the UK, 30,000 babies and children are newly diagnosed each year, and more than half a million children and adults are living with a genetic disorder. Every year, they host Jeans for Genes Day, which encourages people to attend their workplace/school in jeans and donate towards GDUK. Funds raised on Jeans for Genes Day provide grants for projects and services that benefit children affected by a genetic disorder. https://www.geneticdisordersuk.org/

About The Percy Hedley Foundation

The Percy Hedley Foundation provide a wide range of high quality, specialist and personalised care and education support to disabled people and their families. https://www.percyhedley.org.uk/

About The Adamson Trust

The Adamson Trust provides financial help with the cost of holidays or respite breaks for disabled children aged between 3 and 17 with physical, mental or emotional impairments. http://www.theadamsontrust.co.uk/

About The Bruce Wake Charitable Trust

The Bruce Wake Charitable Trust was established to encourage and assist the provision of leisure activities for the disabled.


Hannah Dempsey
Wednesday, 20 February, 2019 - 14:35

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FOP Friends is a Registered Charity in England and Wales #1147704

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