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On Friday 6th August 2010 we will be taking the train to John O'Groats ready to embark upon our cycle across the UK. Our final destination will (hopefully) be Lands End. It should take us 10 days to complete from beginning to end!
We'll be travelling over 950 miles, passing through Wick, Inverness, Glasgow, Warrington, Bristol, Exeter and Newquay, amongst many other towns.
Thanks to Becky's time working at Cherry Garden School in Bermondsey, we have decided to raise money for the Jordan Jay Trust. The Trust has been established to raise funds for research into the treatment of Late Infantile Battens, also known as CLN2.
The development of therapies will directly benefit 500 children that are diagnosed with this devastating disease throughout the world and be a potential cure for around another 40 genetic disorders, saving the lives of thousands of children.
Late Infantile Battens is a rare genetic disorder with less than 500 known cases worldwide. To be affected, a child must inherit two defective genes, one from each parent. If each parent carries the defective gene, chances are 1-in-4 that any child will be affected. The disease generally starts between 2 and 4 years old.
The defective gene causes a deficiency of an essential enzyme, resulting in the body’s inability to break down lipopigments (fats and proteins). The build up of these fats and proteins ultimately forces the child’s brain cells to shut down.
Striking without warning, the first signs of Late Infantile Battens are seizures, loss of muscle co-ordination, blindness and mental deterioration. Battens leads to a vegetative state and is ultimately fatal (usually between the ages of 8 and 12).
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
Thanks
