“A fantastic and informative event” is how those who were there described the Aniridia Network UK Conference 2012. A mix of presentations, discussion time, formal elections and a social event – it was the biggest event we have staged to date.

“It was excellent, truly excellent. I learnt so much about myself” said Keith who has aniridia. “It was like joining up the dots in my life. I came away feeling much more confident about who I was, what the condition means to me, my options for the future, and in many ways how lucky I’ve been.”

Morning sessions

Chairperson Katie welcomed everyone to the event at the Manchester Conference Centre on 19 May 2012. With 59 people, attendance had far surpassed expectations.

First, to set the scene, trustee James gave an introduction to Aniridia Network UK and a review of its recent activity. After highlighting excellent progress he stressed that providing better support, increasing fundraising and having more volunteers were the current priorities.

Next Katie returned to the front to give a talk entitled Aniridia: Back To Basics. She gave a comprehensive briefing on the main aspects of aniridia and associated conditions.

Tea and lunch breaks provided chances for delegates to talk to each other. “It was beneficial for my daughter to meet other children with aniridia. She had a fantastic time” commented parent Julie.
Katherine who has aniridia along with her mother and son said she liked “the actual meeting of other families with the condition which was informative and supportive as it can feel a very lonely condition”.

The next speaker was Consultant Ophthalmic Surgeon Ms Cecilia Fenerty from the Manchester Royal Eye Hospital. She gave a very entertaining presentation which included, for each of the spectator’s tables, a model of an eye that could be taken to pieces. Volunteers from the audience also helped demonstrate the causes and treatments for glaucoma, including simulating surgery on a balloon!

Later, feedback showed Ms Fenerty session was the clear favourite among the delegates. Below are details of how to view all the presentations.

Lunch was also very popular – the food ran out!

Childcare provision

Something to occupy young children was another welcome and first time feature of conference: “The childcare was great – they didn’t get bored, and we could listen to the talks properly!!” smiled parent of three Laura. Whilst an aspiration at previous events, childcare was not in the original plan this time either. However with 12 children coming it became a necessity. At the last minute we paid an agency to provide two trained, certified nannies plus toys. Even with a significant discount on the original quoted price this was only possible thanks to previous hard fundraising efforts by our volunteers.

Afternoon sessions

In the afternoon Susan, mother to Tora who has aniridia, gave an emotional and touching talk about her experiences. It resonated with many parents and gave insight for the adults with sporadic aniridia too.

Afterwards, Tora’s Qualified Teacher for the Visually Impaired Michelle Gregory, spoke about her role supporting Tora and generally at Kirklees Council. It was very informative and prompted discussion about the differing provision between councils.

Viewing the presentations

The presentation slides are available online but to access them you need a password that is only given to people who live in a UK household with ANUK membership. The password is included in our email newsletters to members or given upon request after completing our membership form.

All of the presentations were captured on video thanks to volunteer Andrew. We hope to publish the videos in the future. It will happen sooner if someone helps with the editing. If you could assist let us know.

Annual General Meeting

Next on the agenda was Aniridia Network UK’s formal annual general meeting. Chair Katie acknowledged everyone who had helped the charity in the past 12 months – particularly Craig who was stepping down as Treasurer after several years of service. Then she outlined the volunteer roles available.

The nominees for trustee positions were elected en-bloc: 4 continuing and 3 new people.

We were very pleased to have some new people put themselves forward for the listed officer posts. We can only achieve our goals with people to work towards them. The trustee board will confirm these appointments in shortly.

In the following months the new Treasurer also published the accounts for 2011/12:
Total Incoming resources: £1,712
Total resources expended: £838
Fund balances as at 31 March 2012: £1,495

Fundraising

The final session was led by trustee Liz. She briefly described the charity’s need for income and hence donations and fundraising efforts. Delegates suggested a number of good ideas and were encouraged to do what they could themselves too.

To support this each delegate received a folder containing a fundraising resource pack. It also held notes from the presentations and a free gift – a Aniridia Network UK branded credit card sized Fresnel lens magnifier.

The drawing of a raffle rounded off the day. It had raised an excellent £130. Prizes had been donated by the trustees:

1. £25 Amazon gift certificate
2. Ladies watch
3. Bottle of champagne and Thornton’s Chocolates
4. Hot Rox electronic hand warmer

Closing

Finally a big round of applause was given to Heather the volunteer Conference Coordinator. She had done an incredible job of organising the day. Everyone said had been very professionally executed. Long term member Mark described it as “a step change from previous years and setting a new bar for the future”.  Other feedback included:

“The Conference was excellent you all did a super job.” – Julie

“Fantastic conference this year, guys! A big thank you to all the organisers and speakers, for making it such a great day.” – Laura

“I really learnt a lot from the conference. Thank you Aniridia Network UK.” – Dawn

“We had a great day! Really interesting, lovely to meet many new people! A really enjoyable day! Thank you.” – Tracy

“I found that speaking to other parents of children with aniridia was very beneficial to both of us. I really feel that Saturday was a great day. I can’t wait to do some more fundraising.” – Natasha

“Most beneficial was meeting other people with experience of aniridia, plus information about research and treatments.” – Claire
ANUK members can read Claire’s own account of the conference.

Social evening

While the conference had ended the night was still young for some. A minibus drove people to the Trafford Centre for the optional social evening. 26 adults and children enjoyed two games of bowling. Mary who is severely sight impaired due to aniridia easily won the high scorer prize with 144 points. After food from Pizza Hut the minibus returned to Manchester Piccadilly Station. From there people dispersed to hotels and trains home.

Wrap up

Delegates unanimously said they were very satisfied with the day in the online feedback survey that was distributed the next day.

The organising trustees and Conference Coordinator held a review meeting where they discussed what went well, what didn’t and what we can improve on next time. While there were several lessons to learn everyone agreed that none detracted from what had been an extremely successful event.

Here are all the photos of the day. If you have more please send them to us.