Many of you may have already heard of FOP Action from previous blog posts that I have written, as well as from Bronco news. For those who aren’t aware it’s a fundraising group who are actively raising as much money as they can to support the research into a cure for FOP, being carried out by Oxford University.
FOP, which stands for Fibrodysplasia Ossificans Progressiva is a rare disease which affects the connective tissues in the body and causes tendons and ligaments to be replaced with bone, basically causing really stiff movement and paralysis. It’s a really awful disease and its close to our hearts as little Jasmine (Dave’s cousin’s daughter) suffers from it.
This is Jasmine with her Mum, Kelly
Over the years we have helped by designing, building, hosting and maintaining the current FOP Action website as well as making donations to the fund. Most recently, when we renewed our wedding vows, we asked for donations rather than presents and raised £755, which Bronco then added an extra £1000 to, which was all donated to FOP research.
This is at the wedding renewal 🙂
At the beginning of the year there was bad news for the Oxford University Research as the funding has been dropped which means that the families of FOP need to raise £120,000 by January 2013 which is a massive amount as you can imagine. We have added a “totalizer” to the website to show the progress each month and so far this year £18,310 has been raised so there’s still a long way to go.
There are lots of events being planned for the coming months, and if anyone can help the research fund by sending a donation of any size it would be fantastic to get this target reached so that the sufferers of FOP can know that there could well be a treatment found soon.