Hi there,
Thanks for visiting my fundraising page. On May 10th I plan to run the Leeds Half marathon to help raise money for the charity Amy and Friends.
Amy and Friends is a charity (www.amyandfriends.org) that was set up by an amazing lady called Jayne Hughes who's daughter Amy suffers from Cockayne Syndrome, an illness for which there is currently no treatment available in the UK. They raise money to help pay for children with Cockayne Syndrome to travel to Boston, USA to receive essential treatment by a specialist there and also help the children and their families meet up in the UK for mutual support.
Cockayne Syndrome (also known as Weber-Cockayne Syndrome or Neill-Dingwall Syndrome) is a rare autosomal recessive congenital disorder characterized by growth failure, abnormal sensitivity to light (photosensitivity), impaireddevelopment of the nervous system and premature aging. Problems with any or all of the internal organs are possible, but hearing and eye problems are commonly seen.
My reason for choosing this charity is that last year Leo, my friends little boy was diagnosed with Cockayne Syndrome. Without this charity, i honestly don't know how she would be dealing with what she is going through. They have provided and continue to provide support to her, Leo and her family that is second to none.
Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Amy and Friends gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.
Thanks for visiting my fundraising page and please donate to this amazing charity to help raise awareness of their work and help then to continue to provide the support and services to children with Cockayne syndrome
Alison x
