Come on sponsor us ... its tomorrow!!!
Hey,
So as you know I’ve decided to take part in a couple of sport events this year, the London to Brighton bike ride on 21 June 2009 and the London Mazda Triathlon (Sprint distance) on August 1, and as I have to punish myself through a training regime I thought it’d be good to have someone to share the pain … hence Anthony’s reluctant decision to join me!!!
For those who know us we both love the great outdoors and are keen cyclists. We both like a challenge (worrying because we’re also both very competitive) but the main reason I am doing this is because I’m hoping to raise awareness of an illness which is pretty rare, but runs through my family.
The illness has been diagnosed as Charcot-Marie-Tooth (CMT) http://cmt.org.uk which is also sometimes referred to as Hereditary Motor Neuropathy. It is related to Motor Neurone disease and is a hereditary muscle wasting disease. The illness is progressive so from onset, the symptoms worsen with time. The individual has the ‘normal’ muscle distribution within the limbs however the motor neurones do not relay messages to the muscles enabling them to develop as would usually happen. The wastage is especially prevalent in the lower limbs, so this makes walking, and gripping objects in the hands increasingly difficult. Due to the lack of strength in the legs, balance is greatly affected, walking in most footwear is impractical and heels are impossible … much to the annoyance of female sufferers! In addition to the practicalities of everyday life, this is especially hard on young, sporty, outgoing and attractive people who have had to adapt their lives to accommodate the things which they simply cannot do.
The main point here is not that you guys feel guilt-ridden into spending a load of money donating to this charity, but to raise awareness. Hopefully if more people are aware, you’ll be less likely to stare at someone who walks in a slightly different way to you or push past someone leaning against something for balance in a pub … the amount of times I’ve been with a relative and this has happened it is infuriating!
The charity is currently working closely with the UCL hospital of neurology to identify the gene which may prevent sufferers from passing on the condition to their children, as well as treatments to ease the pain & discomfort, prevent progression of the illness, and of paramount importance, to offer counselling and support to the sufferers and their families.
I know you’re all probably sick of seeing these justgiving pages (god knows I am!) and we’re all skint etc but please spare some cash to this cause (even if it’s a small amount). CMT really needs the publicity and cash to help improve the lives of sufferers.
So all that’s left to say is wish us luck on the London – Brighton and the London Mazda Triathlon and if anyone comes down to either, keep your eyes peeled for me (I’m the one who’s face goes purple – not a good look!). Girls, hope I do you proud!
Cols & Tony :0
P.S if you're a UK taxpayer plese say so when you donate as they add a % of the money you donate!
