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Author Archives: Aniridia Network
A different way to see the sights of London
By Sarah Are we gluttons for punishment or just determined to prove it wasn’t a fluke? Lorna and I have been off round London again in aid of research into aniridia. We did the Carrot NightWalk in London yesterday. This time our starting … Continue reading
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
1 mile open water swim in aid of aniridia
Sunday 16th February 2014… 12.30pm I got the phone call I had been waiting for. My sister, my best friend had gone into labour and was due to give birth to my nephew. As a mother myself having given birth … Continue reading
Teenager with aniridia coaches other disabled children
Lois, 16 who has aniridia has been made a lead sports coach by The Change Foundation. She is teaching others to play cricket The Change Foundation believes in changing lives through sport and are running a project that gives disabled … Continue reading
Tracy with aniridia talks of her job as an Eye Clinic Liaison Officer
Here’s a recording of an interview with one of our members who has aniridia. She has recently started work as an ECLO, providing information, advice and practical or emotional support on living with sight loss. The interview is by VI … Continue reading
Posted in Other agencies, Patients' tales
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Young people with aniridia needed for sleep research
Scientists want adolescents and young adults to take part in a study to learn more about how an aniridia-related gene affects sleep. Are you the kind of person they are recruiting? aged 10 to 20 years old with aniridia medically stable … Continue reading
Posted in National Institute for Health WAGR study, Research
Tagged melatonin, NIH, pineal gland, sleep
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Aniridia and Nystagmus meetings in Leicester on 28 June 2014
4:30pm, Lounge Bar, Mercure Leicester The Grand Hotel, Granby Street, Leicester, LE1 6ES IMPORTANT TO RSVP: meetup@aniridia.org.uk Anyone affected by aniridia, including relatives are invited to join us in Leicester to find out more about each other and discuss aniridia … Continue reading
Posted in Aniridia Network news, Other agencies
Tagged meetup, nystagmus, nystagmus network, university of leicester
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Questions & answers on aniridia
Session at Aniridia Network UK Conference 2014 By: Panel of experts and individuals affected by aniridia A chance to ask that question that you always remember on the way home from your appointment or that there never seems to be … Continue reading
Sighted guiding and general mobility presentation
Session at Aniridia Network UK Conference 2014 By: Rick Allbrook Rick Allbrook from Guide Dogs for the Blind Association (GDBA) discussed their role as a mobility charity and how they support people with sight loss to get out and about independently. … Continue reading
Living with aniridia – A generational perspective presentation
Session at Aniridia Network UK Conference 2014 By: Mary Cox Mary Cox, her father, and her two daughters were born with aniridia. 2014 was the centenary of her father’s birth. In the previous 100 years understanding and treatment of the … Continue reading
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