John O'Groats to Land’s End!
Meet Stanley, our content and smiley little boy.
This Superstar has an incredibly rare genetic condition called MECP2 Duplication Syndrome.
MECP2 Duplication Syndrome is caused by a second copy of the gene MECP2 and usually affects little boys.
These boys struggle from an early age, with developmental delay, very little or no speech, floppiness, immobility, difficulties with feeding, seizures, and compromised immune functioning.
Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death in affected individuals, with only half surviving past age 25.
But recent research shows that there is great promise for curing MECP2 Duplication Syndrome. Due to the straightforward genetic mutation which causes the syndrome, it is a first-line target for gene therapy.
To date, nearly all MECP2 Duplication Syndrome research worldwide has been funded by families and friends of affected children.
We want to be part of this revolution, in helping to secure a bright future for Stanley and other boys just like him. Please consider sponsoring this cause or taking part in a fundraising event on behalf of Stanley.
Be one of Stanley's Superstars.
Xxx xxx xxX
Pete Gadd & Ben Whalley, Gunnislake Karate Club.
We will catch a train north on the 18th June. 36 hrs later we should hopefully find ourselves in John O'Groats. We have then allowed two weeks to cycle the 950-ish miles to Land’s End (work and understanding families have determined the time limit!) We are hoping to average 80 miles a day and to eat as much cake as is humanly possible. We will be totally unsupported which means carrying everything we need with us, camping in hedgerows as and when we need to stop. This is the most challenging thing we have ever participated in and there will be moments of reflection when we ask ourselves what bloody hell are we doing?! By sponsoring us you will be giving us the motivation to get on with it.
Please visit; www.justgiving.com/fundraising/stanleys-superstars
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