Fraser Sheader

Fraser's Triathlon Charity Page

Fundraising for Skye Wellesley Foundation
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Event: Virgin Active London Triathlon 2011, on 30 July 2011
Skye Wellesley Foundation

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RCN 1127939

Story

As most of you will know I am about as far from been a Triathlete as it comes! An Olympic distance Triathlon is..... 1.5k open water swim, 40k and a 10k run for good measure.

This is going to be a massive challenge and I will be very grateful of any donation you make to the foundation.

 You will make a difference with your donation!

Skye Wellesley Foundation

Skye Wellesley was diagnosed with Rett Syndrome when she was just a small young girl, yet this debilitating syndrome is widely unknown. Very few are aware of the syndrome yet it affects 1 in 15,000 young girls and consequently several thousand families in the UK today. The Skye Wellesley Foundation aims to provide funding for research in order to understand not only how but why the syndrome exists, so a cure or solution can be found.

Rett Syndrome is caused by a sporadic genetic mutation for reasons yet unknown. It affects 1 in 15,000 girls around the world, drastically slowing neuro-development leaving most unable to speak and only half able to walk. As well as the physical capacities, girls suffering from Rett Syndrome are also prone to scoliosis, problems with digestion, epilepsy and fits of extreme anxiety.

Current research on the syndrome is proving very promising and making great progress though is still far from a cure. Every step forward the research makes is a further step forward to helping these young girls and their families deal with the everyday tasks that are just that little bit harder for those suffering with Rett Syndrome. Yet any and every small step forward research can infinitely affect the day-to-day life of those affected bringing hope for a resolution.

 

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About the charity

Skye Wellesley Foundation

Verified by JustGiving

RCN 1127939
In June 2008 Skye Wellesley, aged one, was diagnosed with Rett Syndrome. Not being aware of the existence of this condition at the time, the horrific days and weeks that followed we, her family, discovered what it means to us and to about 2,000 other families in the UK. Rett Syndrome is caused by a sporadic genetic mutation on the MECP2 gene located on the X chromosome. This microscopic change in the structure of chromosomal proteins has an overwhelming impact on the life of the 1 girl in 15,000 statistically around the world. Most obviously, Rett chronically slows these girls neuro-development, very few Rett girls will ever speak and only half of them will walk. Behind the physical incapacity, there are also additional problems as Rett girls are prone to scoliosis, difficulties with digestion, epilepsy and fits of extreme anxiety. We set up the charity to fund research into finding a cure for Rett. There has been very significant progress towards that goal over the last four years and I'm pleased to say that Professor Adrian Bird at Edinburgh University is at the forefront. Research can be very focused as the gene, MEPC2, that causes Rett was pinpointed ten years ago. Finding a cure for Rett would bring so much happiness to many girls who are prisoners within their own bodies, plus it will help to find a cure for other genetically related disorders. Thank you

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£10.00
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