Thank you Doug for inviting us to write a guest article for your blog!
We’re a small national charity based in Harpenden, just down the road from Doug. We help children who have been diagnosed with a disabling, terminal genetic condition called Ataxia-Telangiectasia, (which no one can say), so we call it A-T.
We want to do more to raise our profile with cyclists, runners and anyone who believes life is for living! If an intense, exhilarating and rewarding cycling experience is at the top of your list, then join us for the Vive le Vélo! Champagne Cycle tour from St Albans to Epernay with all meals, mechanical support and return travel to St Albans included.
There is an option to either self-fund the tour or fundraise for this magnificent little charity, which has just 3 full time staff and where every donation makes a huge impact. If lycra and the open road is your thing, there is no better place to be from 7-11 September!
If you need any further inspiration – watch our video featuring one of the lovely children with A-T.
How great would it be for Doug’s blog to generate a Cycle Hub team to celebrate life for kids with A-T?
You can find full details of the tour here www.atsociety.org.uk/champagne or call Suzanne on 01582 760 733 for a natter.
So what is this A-T thing?
Basically around 1 in 200 people carry a dodgy gene, but you will never know about it unless you happen to have a child with another carrier. If your child is extra-wobbly (clumsy) and prone to endless coughs and colds, they could have A-T, but as most doctors have never heard of the condition it’s hard to get a diagnosis. Children with A-T use a wheelchair by the time they are 10 and are very disabled from then on. Although there is nothing wrong with their minds – they are a smart, sassy bunch of kids – they are at high risk of cancer and lung disease. Average life expectancy is 26, but in the last five months, four children under 13 have lost their lives to A-T.
The A-T Society supports families even before diagnosis, ensuring children get the specialist medical care, help with education and the best quality of life possible to them. We also fund research towards treatments and a cure, and because A-T is such a complex condition, our research is already having an impact on cancer and other genetic and neurological conditions. So it’s win-win for everyone!
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