Wednesday 8 October 2008

Sponsored Circuit in Memory of Bex Snowden


We are holding a sponsored circuit session on Tues 4th November in memory of Rebecca “BEX” Snowden.
Rebecca died at the age of 4 on September 19th 2008 from a rare disease called Cockayne Syndrome.
Bex is the niece of one of our gym members Carl Murray and daughter of Dave & Yvonne Snowden.
The charity we are raising money for is called Amy & Friends.

The aim of the sponsored circuit is to raise money for the charity and raise awareness of this rare disease.
It will consist of 10 exercises, 3 minutes on each with no rest. I myself will be sparring for 2 hours! 2min rounds with 1min rests between, that’s 40 rounds!
Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan. CS is inherited in an autosomal recessive pattern. In order for a child to be affected by CS, he or she must inherit a mutation (-) in the same CS gene from both parents. The parents and other “carriers” of a single CS gene mutation remain healthy. Once a couple are known to carriers, they have a 1 in 4 (25%) chance of having another child with CS.
The symptoms of Cockayne syndrome vary significantly, especially with regard to their age of onset and rate of progression.
I would appreciate everyone’s help with this in raising awareness, and raising as much money as we can for this great cause. I would like to thank you in advance from all at the club as well as Bex family.

Anyone outside the club who wishes to take part or make a donation please contact us.
The money raised will help other familys live a better quality life and help to fund finding a cure as well as helping with the costs of medicine for these familys.

All who participate will recieve a personalised certificate from the club with the amount they raised.

A message from Dave:
Cockayne syndrome is very rare and only found in 1:500:000 people, I am reaching out for help if not to cure this syndrome then to make people aware and understand, and if possible help other children and families live a happy fulfilled life.Thank you all so much for your help
Dave (Bex daddy)

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