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Author Archives: Aniridia Network
Collection at Catterick nets £419 for ANUK
Today Aniridia Network UK Fundraising Officer Liz and her relatives put on ANUK t-shirts and took collecting buckets to the Sunday market at Catterick Racecourse in Yorkshire. Shoppers give their change as they leave the market. The day was sunny … Continue reading
Raising kids is hard enough, so how do mothers with aniridia cope?
Teri I was born severely sight impaired, so I’ve never really known any different. When I was a young woman in my twenties my condition was stable. I was pretty independent: I had a job, as a bank clerk, and a … Continue reading
Posted in Parents' accounts
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Diagnosis difficulties – a father’s success
Three years after complaining that his child was not diagnosed with aniridia until she was a year old, a dad has spurred change that could prevent it happening to others. Fuad’s campaign has led to the NHS recognising that in … Continue reading
Meet-up in Bristol on 5 October 2013
4:30pm, Terrace Bar/Coffee Shop, Bristol City Centre Marriot Hotel, 2 Lower Castle Street, Old Market, Bristol, BS1 3AD RSVP: meetup@aniridia.org.uk Anyone affected by aniridia, including relatives are invited to join us in Bristol to find out more about each other … Continue reading
Posted in Aniridia Network news, Other agencies, Parents' accounts, Patients' tales
Tagged meetup, nystagmus, nystagmus network
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A mother and son’s perspectives of aniridia
Thirteen and a half years ago, if you had asked me what Aniridia is, I would not have a clue. But an event which happened in 1999 changed all of that: my son Daniel was born. The first few months … Continue reading
Posted in Parents' accounts, Patients' tales
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£1,000 donation from Ride London team
We had a £1000 donation from “the Fairy Queen Dream Team”, who completed the RideLondon-Surrey 100 cycling event today. The team was headed up by James, father of Ella who has WAGR/11p Deletion Syndrome. They were primarily raising funds for … Continue reading
Cakes, car washes and stocks at RNC/ANUK fundraiser
On the 1 and 2 July 2013, Rosie, Megan and I joined together as a group to raise money for Aniridia Network UK and our further education college RNC (Royal National College for the Blind). Over the 2 days, we held 3 events which … Continue reading
Review of Aniridia Network UK Conference 2013
By Sarah Conference 2013 was the first Aniridia Network UK (ANUK) conference that I had attended. I had quite an intense experience as I was there in both personal and official capacities – having aniridia and being part of the conference … Continue reading
Leicester researchers seek under 7s with aniridia
Researchers in Leicester are seeking children with aniridia to take part in a study of the retina and optic nerve. Would your child like to participate? They are monitoring the normal and abnormal development of the retina and optic nerve in … Continue reading
Phil’s triathlon raises over £500 for ANUK
A massive thank you and well done to Phil who has raised £560 for Aniridia Network UK by running a triathalon. The race at Ripon racecourse in Yorkshire was his first ever attempt at the swimming, cycling, running challenge. Here’s … Continue reading
Posted in Aniridia Network news, Fundraising
Tagged collection, fundraising, triathlon
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