FOP Friends
| Founded | 1 March 2012 |
|---|---|
| Type | Charitable organization |
| Registration no. | England and Wales: 1147704 |
| Focus | A cure for FOP |
| Location |
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Area served
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United Kingdom |
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Chairman
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Chris Bedford-Gay |
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Trustees
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Alison Acosta Bedford (Founding), Rachel Almeida (Founding), Helen Bedford-Gay, John Lever, Fiona White, Nicky Williams |
| Mission | Promote research, education, support and awareness in order to discover treatments/a cure for FOP |
| Website | www |
FOP Friends, formerly Friends of Oliver, is a registered charity in the United Kingdom established on 1 March 2012. It aims to raise funds that are needed to find effective treatments for the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). The charity also works to raise awareness and understanding of FOP amongst medical communities and the general public.
Friends of Oliver was founded by Chris Bedford-Gay after receiving the news that his son Oliver had been diagnosed with FOP. With FOP being such a rare disease, there was no UK charity dedicated to raising funds for research into effective treatments/a cure for the condition. The original intention of Friends of Oliver was to keep family and friends updated with breakthrough news, to thank them for their continued support, and to celebrate Oliver’s milestones. However, the charity grew significantly and an increased number of families affected by FOP began getting in touch. Friends of Oliver evolved into FOP Friends. This brought together the whole UK FOP community with the same goal: a cure for FOP.
In May 2014, FOP Friends held a UK FOP Conference and Family Gathering. An event like this had not taken place since 2000. The event gathered together families from all over the UK that were living with FOP. Presentations were given by doctors and researchers from the University of Oxford, England, and University of Pennsylvania, USA, as well as IFOPA and Clementia Pharmaceuticals.Dr. Frederick Kaplan, Dr. Robert Pignolo, and Dr. Eileen Shore from the University of Pennsylvania also ran clinical appointments for patients suffering with FOP.
In May 2016, FOP Friends held their second UK FOP Conference and Family Gathering. This was funded by a successful grant from the Big Lottery Fund. Families, researchers and clinicians came together with over one hundred delegates present on the day. Presentations were given on the most recent research updates and Q&A workshops took place in the afternoon.
All the money raised by FOP Friends goes directly to supporting the research into finding a treatment and a cure for Fibrodysplasia Ossificans Progressiva.
Researchers at the University of Oxford were instrumental in the discovery of the gene responsible for FOP in 2006. Professor Matthew Brown, a geneticist at Oxford, collaborated with Professor Jim Triffit, a member of the FOP team, to investigate the genetic linkage between families with inherited cases of FOP. This allowed the Oxford team to map the precise location of the FOP gene on the human chromosomes. The gene, a BMP receptor termed ACVR1, was mapped to chromosome 2 and more precisely to a small region between bands 23-24. The current University of Oxford FOP Research Team, established in 2009, is led by Professor Jim Triffit and Dr. Alex Bullock.
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