by rohan » Thu Jun 26, 2014 9:42 am
Some of you may know that I have been planning a long distance walk (142 miles) from Ratho to Caterline. This was my granddaughter (11) Elemental's idea and we also decided to raise money for research into a very rare disease that her cousin ( 12) suffers from. Dylan has Fibromyalgia ossificans progressiva (Fop) and the research is mainly funded by friends and family of the sufferers as the Government doesn't give any funding towards it. As there are only 35 sufferers in the Uk it is a mammoth task to keep the research going year on year. The research is also informing treatment of more common bone conditions such as oesteoporosis and bone cancer.
I know that there are frequent demands on all of us for charitable donations for worthwhile causes but if you are interested in supporting us please look at our facebook page which you can get to by searching for Team Lighthouse Fop Walk in google or Facebook. There are links there to to the Virgin money giving page where you can donate (even better). Alternatively PM me and I will send you the links but I leave on Sunday morning......
Eventually we'll do a TR for WH but I am notorious for starting a TR then not completing it.
