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Author Archives: Aniridia Network
£500 donation from 200 mile bike ride
A huge thank you to parents Caryl and Tristan for a £500 donation resulting from taking part in a 200 mile charity bike ride from Caernarfon to Cork. It will make it possible for us to print leaflets for hospitals … Continue reading
Review of 2013 Make a Miracle Conference and Social
By Veronica van Heyningen The 2013 meeting of Aniridia Foundation International (AFI) was held in Charlottesville Virginia, USA, at the beginning of August. Many of you may be beginning to take for granted the format of these meetings with patients and … Continue reading
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
