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FOP Friends

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What is Fibrodysplasia Ossificans Progressiva (FOP)? =========================================== FOP turns otherwise healthy children into human statues: a healthy mind locked inside a frozen body. Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across the joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine where one normal organ system turns into another. Most cases of FOP are new, meaning no-one else in the family has FOP. This happens because unexpected changes (mutations) occur as the genes are passed along from each parent. Many of these changes, such as the mutation that leads to FOP, are accidents of nature that happen for no apparent reason. Children with FOP appear normal at birth except for congenital malformation of the great toes. During the first or second decade of life, painful swellings that look like tumours develop over the neck, back and shoulders and mature into bone. FOP progresses along the trunk and limbs of the body, replacing healthy muscles with bone. These bridges of bone significantly restrict movement and attempts to remove them result in explosive new bone formation because trauma, like surgery, knocks and bumps, accelerates the FOP process. FOP is extremely variable and unpredictable. In some, progression is rapid, while in others it is gradual. One day a person may be able to turn their head or bend an arm, the next they become frozen forever in a locked position. FOP is also known as “Stone Man Syndrome”. Our Vision ========= A cure for Fibrodysplasia Ossificans Progressiva (FOP) and related conditions. Our Mission ========= Fund research to find a cure for Fibrodysplasia Ossificans Progressiva (FOP) and related conditions while raising awareness through education and advocacy. Who we are FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects. Fibrodysplasia Ossificans Progressiva (FOP) causes progressive debilitation eventually leading to early death. FOP research has far reaching implications for those with FOP but also those with common disorders such as fractures, osteoporosis, osteoarthritis and other forms of heterotopic ossification that occur through trauma such as military and sports injuries, paraplegia, post-hip surgery complications. More recently, a rare form of childhood brain cancer, DIPG, will benefit from FOP research and vice versa. FOP Friends aims to raise public awareness of FOP by holding and promoting charitable events and encouraging the news media to report upon FOP and related conditions. This will serve to educate the public to the existence of FOP and of research projects that will benefit not only FOP sufferers but also those with disorders that are more common. FOP Friends was founded following the diagnosis of Oliver Bedford-Gay with FOP at the age of 1 (he is now 7). Originally setup to thank friends and family who were fundraising toward FOP research in the name of Oliver, it soon became clear that a dedicated UK FOP charity would benefit the whole FOP community, at which point FOP Friends (formerly FOP Friends of Oliver) the charity came to be. The aim of the charity is to support the search for a cure while raising awareness; and educating the public and medical world of the condition. FOP Friends support existing patient organisations; existing research programmes such as at the University of Oxford; promotes FOP research worldwide; and helps other FOP families. As a fully registered charity, FOP Friends became in a position to take advantage of funding opportunities and programmes from which only registered charities can benefit. To date, over £70,000 in grants/trust funding has been won. Each year the trustees vote on which research or other projects to support with monies raised. To date, this has been targeted at maintaining (and growing) the University of Oxford’s FOP Research Project. As we grow as a charity, FOP Friends continues to support the search for a cure that will not only benefit those with FOP but many other related conditions.

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