Why Does Turtlez Support FOP
Given the rareity of this condition it is not widely supported, in fact most medical professionals are unaware of it. As such the families who experience FOP need all the help and support they can get. Turtlez director Chris knows first hand what this means as his first son Oliver was diagnosed with FOP just after his first birthday in 2009. Since then whenever possible Chris has aimed to raise awareness of the condition and generate donations to help find a cure.
What Is FOP
FOP in an abbreviation for Fibrodysplasia Ossificans Progressiva previously known as Myositis Ossificans Progressiva. In dramatic terms it means the suffer will "turn into a human statue as they age".
FOP is a rare and distressing medical condition where bone forms in muscles and other soft tissues of the body. Whenever extra bone is formed across the joints it restricts movement. It is a progressive disease and there is no cure. It does not effect a persons intelligence.
FOP affects 1 in 2 million people worldwide. It has no ethnic or religious pattern. There has been 700 confirmed cases across the globe from an estimated 2500. In the UK there is 45 known cases and 285 known cases in the United States.
Who Can Get It
Most cases of FOP are new, meaning no one else in the family has FOP. This happens because sometimes unexpected changes (or mutations, the scientific word for change) happen as the genes are passed along from each parent. Many of these changes, such as the change that leads to FOP, are accidents of nature that happen for no apparent reason.
How Can I Help
If you wish to help find a cure for this terrible condition please either contact Turtlez for further information or donate directly to either the Oxford University or IFOPA, details and links are provided below.
Oxford University [Donate]
You can donate money to Oxford University where Professor James Triffitt of Oxfords Institute of Muscloskeletal Sciences is one of the few scientists in the world conducting research into FOP. FOP research relies heavily on enlightened supporters such as Mr Simcox because it receives little statuary funding. All donations received fop goes into researching this distressing condition. The University of Oxford has full charitable status but is exempt from the need to register with charity commissioners. The University Charitable Tax Exempt number is X7585.
International FOP Association (IFOPA) [Donate]
The International FOP Association is a non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). Our mission is to eliminate FOP as a health concern through education, advocacy, research and support.