I would like to put in a request for donations of handmade cards if any lovely people out there are wanting to donate. We are a very small charity (only 45 sufferers in the UK) so you really would be doing a great thing.
We are running a coffee morning at Rochdale Town Hall on Friday 15th June 2012, to raise funds for FOP Research, the terrible genetic condition my little boy, now 4, suffers from. The money from the Coffee morning will all go to the Oxford University FOP Research department again. We need to raise £120, 000 by January 2013 or the research programme will be significantly cut / closed down.
FOP is a rare genetic disorder, affecting only around 45 people in the UK. Over time, the sufferers will grow a second skeleton, effectively turning them into human statues. There is an article here: http://www.dailymail.co.uk/health/ar...cles-bone.html about a friend of ours who is also suffering from the same condition. Her mum has been amazing at raising money this year to help us reach our target to maintain the Oxford Research department. The outcomes of FOP research also have positive implications for the understanding of other conditions such as osteoporosis, osteoarthritis and heterotopic ossification. Postoperative surgeries can result in heterotopic ossification (bone formation) which may affect people having hip replacement surgery, injured military personnel and sport people with injuries
Last year the coffee morning made an incredible £1400 but with times being more difficult I don't think we can hope to match that, but I am still hopeful we will make some contribution to the Research team.
I know this is a big ask since the lovely folk at Royal Mail have just made a ridiculous price hike, but if people we able to donate just half a dozen before the 15th June, that would be amazing!
If you have any questions about the condition or how the money will be spent, please just ask,
Many thanks
Helen
www.friendsofoliver.com
www.fopaction.co.uk
www.ifopa.org
P.S Any of the ladies who go to the Rochdale crops are welcome to come along!!! Friday 15th June 10am - 12:30pm Rochdale Town Hall. £2.50 including refreshments and entry raffle! Lots of lovely things to buy!