Everyone affected by aniridia: patients, relatives, doctors, teachers etc was invited to join us in to find out more about each other and discuss aniridia related topics.
Kelly, who has a daughter with aniridia was the host. Afterwards she said:
“It went well given it was the first time any of us had met. There were different ages and experiences. So once people relaxed a bit they found it a really good experience and were pleased they had made the effort to come.
Some said they were really nervous beforehand. Abigail, a mum, came with her sister. They were really chatty and had lots of questions about aniridia to ask the others which helped break the ice.
I’m going to take my daughter to see one of the older attendees as she doesn’t get out much but was really good to talk to.
A boy with WAGR and so complex special needs introduced us to his guide dog Logan.
Everyone seemed very interested in coming to their first conference also in Newcastle later this year. It was a good warm up and people all said we should try and meet up more often.
Mother and daughter Claire and Mary, both with aniridia commented “Glad we came along, it was a pleasure to meet everyone and Logan the guide dog. Thanks for a good night, looking forward to seeing everyone at the conference”
We held this meet-up immediately after the nearby Nystagmus Network Open Day event. It “brings together 150 people – adults with nystagmus, parents (and grandparents) of children with nystagmus and eye health professionals. It’s a day to learn, mix and ask questions. It’s all about helping each other (peer group support). And it’s a positive day too. ”
How about organising a meet-up of your own? There’s a real appetite around the country for get togethers – it just needs someone to set a good time and place. Even better make it a fun and fundraising activity for ANUK too! Contact us for details of how we can help you make it happen near you.