FOP Action, UK

FOP Action - Working to raise awareness and help find a cure

FOP Action was founded to offer a forum for advice and support to all those affected by FOP, creating a place to find out about helpful aids and equipment and to exchange views and ideas. FOP Action merged into FOP Friends, with FOP Friends now acting as the only UK FOP charity. 

History of FOP Action

Back in 1998, Julie Hopwood and her daughter were watching the documentary ‘The Skeleton Key’ when the penny dropped: Rachel had FOP.  As a result of the show, Julie got in touch with Dr. Kaplan who suggested they joined the international FOP community through FOP Online.  Inspired after attending a symposium in Philadelphia, Julie and her family decided to organise the UK’s first FOP symposium and in 2002 organised the event with the help of some other FOP families.  The event was a great success and many of the UK FOP families met each other, Prof. Jim Triffit and Roger Smith from the University of Oxford, and Drs Kaplan and Shore for the first time.


Over time, the families began to join up through FOP online.  The families all ran their own fundraising events with the aim of supporting the research at the University of Oxford and a number of informal meetings were held.  Then in 2009, an official meeting took place at The Botnar Research Centre at the University of Oxford.  A few FOP families attended, along with researchers and doctors including Prof. Triffit, Prof. Wordsworth and Roger Smith from the University; and Scottish businessman Richard Simcox, whose company had generously supported FOP research.  It was felt that by uniting together to form a fundraising and support group, far more could be achieved: FOP Action was born.  Sheryll Hadley volunteered to become Chairperson; a committee was formed and roles were delegated; Marian Granaghan came on board; and a website was launched and maintained by Kelly Sanderson.  Each meeting brought new ideas and fresh challenges: most importantly of all, how they could raise the £120,000 needed annually to support the ongoing work of the FOP research team at the University of Oxford.  

In 2011, FOP France joined forces with FOP Action to support the work of the FOP Research team and they have made numerous generous donations to date.

In April 2012, FOP Action were delighted to announce Margot James MP as patron of FOP Action. She has supported the group in many ways, most importantly by raising the question of the lack of funding for rare diseases in the House of Commons.

The 2014 Family Gathering was another exciting step forward for FOP Action, providing the opportunity for the FOP families to meet once again to offer each other friendship, support and inspiration.  It enabled families recently diagnosed with the condition, to meet others who understand the difficult road ahead of them, allowing the families to support each other in the way that only someone closely affected by FOP can.

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

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