Conference and meet-ups

2012

Four adults talking while a toddler sits on the floor playing in front of them

Jenny, Elly, Susan and Chris discuss WAGR/11p deletion syndrome while Tara, who has it, plays on the floor

Manchester, Saturday 19 May 2012 – put it on your calendar right now. That’s where and when the next big Aniridia Network UK conference will be. It is your chance to hear from and ask questions in person to:

  • people who have aniridia
  • parents of children with aniridia
  • professionals with expertise relating to aniridia
  • the Aniridia Network UK committee

The venue this time will be the Manchester Conference Centre: “in the heart of Manchester city centre, just 300 metres from Manchester Piccadilly Station” and close to tram bus and coach stations. It is part of a hotel and others are nearby. We’ll announce more details in the coming months.

This year we are extremely grateful to Heather for volunteering to be the Meeting Coordinator. Having a focused individual like her should make it easier to organise. Plus it allows the trustees time to concentrate on other important issues. But Heather really needs your help. Could you:

  • lend a hand with some administration?
  • set up a fundraising event for after the meeting?
  • be or suggest a speaker?

If you have any suggestions please email Heather.

2011

The Aniridia Network UK conference 2011 was on 14 May. It  was a big success. Newcomer Jane said “The highlight of the day for me was definitely being able to meet other parents of children with aniridia, sharing experiences with those at the same stage and receiving wisdom from those who have already ‘been there’. Also, being able to ask honest and open questions of people who have aniridia themselves and to know that there are so many people out there who would be willing to chat to my daughter and support in her journey.”

The agenda included:

Mobility

Explanation of the work done by the habilitation specialists at Priestly School – an an all age specialist centre for pupils with severe sight loss.

Auditory processing disorder

This condition which affects learning has been linked to the same gene which causes aniridia. Expert Dr Doris Bamiou talked and answered questions about it.

WAGR/11p deletion syndrome

A session for discussions and talks from professionals. People coming for this are welcome to join in the morning aniridia meeting or physical activities and lunch if they wished.

Physical activities

The venue was Ackers an outdoor adventure centre. To make this 10th anniversary meeting better than ever we organised archery and climbing sessions to give time to socialise while having fun. They were supervised by staff experienced at both the activities and dealing with disabled people.