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Author Archives: James
Orbit abseil fundraiser
Today I took a big leap to raise £1070 for aniridia. I abseiled 80 metres (262 feet) down the Orbit Tower in London. It was organised by Moorfields Eye Charity, and I was very keen to take on the challenge. … Continue reading
Clear out raises over £35
Like everyone, we’ve got stuff in the house we don’t really need. So as part of a neighbourhood event we held a jumble sale in front of our house. The proceeds were split between our two favourite charities. Once we … Continue reading
Thanks to the person in front
Dear random pedestrian, You never knew it but you really helped a disabled person today. You came to be walking in front of me, in a environment that I found tricky to navigate alone with my visual impairment. Thank you! … Continue reading
Just when you thought it was all over
You’d think that after Saturday’s excellent conference we can all relax. Well yes one big to do list is in the bin but I’ve just written another one. Here it is: Create the online feedback survey and emailed it out … Continue reading
Milton Keynes meet-up
We met on met to discuss aniridia and celebrate Rare Disease Day 2015 at Whetherspoons at XScape, Milton Keynes. We had a great evening talking about dealing with school, doctor and even being a stuntman while having aniridia. If you want to meet more … Continue reading
Protected: James’s jujitsu blue belt and self-defence for the visually impaired
There is no excerpt because this is a protected post.
Posted in Patients' tales
Tagged martial arts, self-defence
1 tweet reaps new member, volunteer and website for ANUK
I monitor the internet for mentions of ‘aniridia’. Last week Phil from Liverpool tweeted that his wife, who has aniridia, had been declared ineligible for Personal Independent Payments. I checked our database and found no record of her. So I … Continue reading
Solar sneezing – effect of light on the nose and brain
I have aniridia and I noticed that when exposed to brightness, particularly sunlight I sneeze within a minute. While taking part in the National Institutes for Health research I took the opportunity to ask Dr Han why this might be. … Continue reading
A rare glimpse into the ordinary
The National Institutes Of Health have published an article and video about their study in to obesity and WAGR/11p deletion syndrome. It features Aniriida Network UK trustee James who took part as a ‘aniridia only’ patient. You can also read … Continue reading
Posted in Medical staff talking, National Institute for Health WAGR study
Tagged NIH, obesity, WAGR
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James @ National Institutes of Health
Introduction Earlier this year I travelled to the USA to take part in medical research related to aniridia. It and the accompanying holiday was a very special experience. Background National Institutes of Health The National Institutes of Health in the … Continue reading
