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 organising team.

Morning

After a sharp 8.30am start to sort out some of the logistics of the rooms and registration, people started to arrive and the day had truly begun. Several people were met at the nearby station and guided to the venue.

Once registration was over and everyone was upstairs, we moved into the seminar rooms, where I was to act as facilitator and introduce the sessions. Our first session was, Introduction to Aniridia Network UK by trustee James. It was a useful session for anyone not familiar with the hows and whys of why we were all there.

Keynote

Veronica van Heyningen CBE, our new patron, gave a keynote speech, entitled Working with Aniridia Network UK and Exploring Aniridia. This was an interesting session and although quite scientific I felt there was something in it for everyone. For example, even coming from a family of people with aniridia and after a lifetime of aniridia I wasn’t aware that there were 365 different mutations of the PAX6 gene.

Veronica said afterwards “It was a new and important experience to see how I can fit in and help as patron. It is also very interesting to see the spectrum of problems that people with aniridia encounter and learn to conquer. In future I hope to bring different members of the Medical Panel to talk about their expertise and to meet the members of ANUK, because direct meetings are really useful in both directions.

Annual General Meeting

We then moved onto the more official part of our day, the Annual General Meeting. Chair and Treasurer Katie and Nigel gave a presentation of the year’s events, developments and finances before moving onto taking suggestions for future activities from the floor.

All of the existing trustees were nominated and duly elected to serve for another year. Some other attendees were kind enough to offer assistance in various quarters such as fundraising and raising awareness of ANUK.

Exhibition Hall

We then adjourned to the hall for lunch and an opportunity to talk to each other. A researcher into aniridia who was there said that having “never met anyone with Aniridia it was great to meet everyone and chat to them. Everyone was so friendly and helpful. I learnt a lot about the genetics of aniridia and how it is relevant (or not) to those with aniridia. It was interesting to see how different it can be in different people. Really enjoyed it!”

In the exhibition hall were stalls from organisations providing services to visually impaired people. These proved very popular and the representatives were pleased to have come along.

There was also the ANUK fundraising stall. Here trustee Liz was selling raffle tickets, t-shirts and magnifiers. The t-shirts were a roaring success: all but one XXL were sold.

Afternoon

After lunch the conference team split the seminar room in two, so that we were able to offer a choice of sessions in the afternoon. I facilitated in one of the seminar rooms in the afternoon. Those attendees with little experience or knowledge of aniridia could attend the Aniridia: Check your knowledge session. The session was useful to a lot of people and may have helped to dispel a few myths.

People who already had a good grasp of the basics could attend the alternate session on surgery. ANUK’s new Medical Advisor Melanie Hingorani explained why surgery on people with aniridia is especially problematic. After there was a presentation about a pioneering stem cell transplant technique trial from a recipient and the research nurse.

The next session in the room where I was located was about the ANUK Befriending scheme. For many parents finding out their child has aniridia is a shock and it can be difficult to get day to day support that isn’t loaded with medical jargon. Lyn runs the scheme to help those families that want to have someone to talk to when they need some down to earth reassurance from someone who has ‘been there’. Lyn explained how the Befriending Scheme worked and gave an example of a recent case, where it has been a benefit and a happy experience on both sides. This session gave comfort to that there was something in place in terms of informal support.

On a slightly more serious note, the next session focused on the Government’s recent welfare reform changes, which can appear quite confusing in terms of what they mean in practice. ANUK’s Disability Rights Adviser, Veda was able to describe the changes in practical terms and address questions raised by those present. I believed that this cleared up some uncertainties, though the changes are very complex.

Anyone with a disability understands the challenges faced by getting out there and finding work. Bernie gave practical advice and suggestions in the next session: ‘Surviving the job search jungle! Releasing the tigress!’. It included details of the services provided by the RNIB to help with job hunting. It was a useful session with lot of practical advice.

Meanwhile in the other room, Lois and Ben, young people with aniridia were telling their stories of their lives.

One delegate said the most beneficial part of the day was “hearing from other people with experience of aniridia (both professionals and attendees), so that we can get an idea of what our daughter might come across in her life. Also a great opportunity to get practical tips from those in the know!”

Three families affected by WAGR/11p Deletion Syndrome held their own meetup session hosted by trustee Jenny who has the condition herself.

Wrap up

At the end it was time for the results of the raffle. Over £200 had been raised – brilliant! The crew from Royal National College for the Blind did very well; they won the gold and two bronze prizes.

Then we had to say goodbye to those who were not joining us for the evening activities.

Evening

It was a pleasant walk to the Islington Tennis Centre. After introductions, we were taught to play visually impaired tennis with a ball containing a bell. We practised our racket and ball skills, before being paired up for short matches. It was great fun for an hour.

Having built up an appetite with physical activity, the players joined the spectators in the gallery for a pizza dinner and chat. All the food was polished off and we said our final goodbyes about 8.30pm.

Conclusions

Even without the official commitments, I would go to conference again. There’s always some new information to pick up, a service or research work to find out about. After a year of being a trustee of ANUK I can recommend getting involved as a volunteer. It is rewarding and satisfying. You also get a true appreciation of what goes on behind the scenes to make a successful conference event.

Feedback from other people included:

“Thoroughly informative, professional and positive conference. Thank you.” – Susan

Brilliant conference, we came from North Wales and so glad we did! It was lovely to meet other children and families and adults with the condition, we learnt loads and have also made some great new friends!” – Caryl

“Fantastic conference. Had a great time. Was lovely to meet so many of you for the first time and catch up with those of you I haven’t seen for ages! So many highlights but WAGR/11p gathering was amazing.” – Jenny

ANUK says thank you to everyone who came and the speakers, venue staff and volunteers including: Lyn, Andrew, Katherine, Jenny, Lois, Bernie, Ben, Sylvia, Nigel, Katja, Melanie, Valerie, Veronica, Veda, Peter, Liz, Margaret, Francis, Zoe, Sarah, Odettte (et al) and most of all Coordinator Heather for making the Aniridia Network UK Conference 2013 such an amazing success. We couldn’t have done it without you.

More photos from the day