Tag Archives: research

Skin in the game – participation in aniridia research

Sarah tells how her skin sample is helping research into aniridia, and yours can too. Having a rare eye condition can seem like a disadvantage a lot of the time, but there are times when you get an exciting opportunity to … Continue reading

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Posted in Patients' tales, Research | Tagged , , , , | 1 Comment

Beth’s experience of research into development of sighted babies of visually impaired parents

Beth, who has aniridia, and her sighted son Edward are taking part in research into his development. Researchers want to know how having a visually impaired care giver affects babies. Beth says she can “highly recommend taking part” so we recorded … Continue reading

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Posted in Parents' accounts, Patients' tales, Research | Tagged | 2 Comments

Sarah’s Carrot Night Walk 2014 for aniridia research

By Sarah Hargraves I’ve been in training again. As last year, to help improve funding for aniridia research, I’m doing the 15 mile Carrots Night Walk. It’s0 in London on 19 September in the dark!. I’m doing the walk in … Continue reading

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Answer the Impact of nystagmus questionnaire

83% of people with aniridia also have nystagmus (‘wobbly eyes’). It is a factor in how much vision these people have. Here is an opportunity to contribute to research in to nystagmus. Nystagmus affects quality of life in all sorts … Continue reading

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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

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Posted in National Institute for Health WAGR study, Patients' tales, Research | Tagged , , , , , , | 1 Comment

Taking part in research into aniridia, hearing and memory

In the Summer 2010 Aniridia Network UK newsletter there was a call to take part in research into the effect of the aniridia gene (PAX6) on the parts of the brain that deal with hearing and memory. Having done some … Continue reading

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Edinburgh Aniridia Conference

On Wednesday evening Sandie (guide dog)  and I met Katie, Jenny and Jaynie (guide dog) on the train up to Edinburgh. As always we talked non stop catching up on the news despite chatting on MSN very regularly. Sandie and … Continue reading

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Posted in ANUK news, Patients' tales | Tagged , | 3 Comments