Sessions at Conference 2014

These were the talks at Conference 2014.

Introduction to Aniridia Network UK

By: Katie Atkinson – Aniridia Network UK Chairperson and Trustee

Introduction to Aniridia Network UK (ANUK) set the scene for the day. It explained the basics of ANUK – why it exists, what its aims are and what it does to meet them. You’ll be introduced to the people currently helping to make it happen and how your involvement as a volunteer, donor, fundraiser, or medical professional is critical to keeping it all going.

Keynote: Our journey with aniridia

By: Mark & Harry Westwood

There was no history of aniridia in the Westwood Family, but when Harry arrived their journey with aniridia had begun. This session is a personal account of learning to deal with Harry’s aniridia and its implications from a family perspective. Everyone’s journey is different and their challenges of moving the family twice in the UK and growing up through the education system with several changes of school are discussed. By working to understand the condition, with support from a wide range of organisations, and by providing opportunities for Harry, they have grown as a family, had experiences that they might not otherwise have had and have learned a lot about themselves. They consider themselves to be fortunate, in that aniridia has given them as much as it has taken away.

The recording of Mark and Harry’s talk is available exclusively to ANUK members. If you need the password contact us.

Pupil Passports

By: Lyn Buller – ANUK Education Adviser

Lyn spoke about the sample information packs we have developed to help children with aniridia through school.

Cells for Sight: Corneal disease and stem cell treatments

By: Dr Alex Shortt PhD FRCOphth and Dr Victoria Tovell PhD

Dr Alex Shortt introduced the work of the Cells for Sight Transplantation and Research Programme. He outlined the challenges and advances with treating cataracts and corneal disease in patients with aniridia.

Victoria in her lab

Dr Victoria Tovell is studying how corneal cells behave without the PAX6 gene, to give insight into potential treatments for aniridia related keratopathy (corneal disease).

Corneal cell are created from stem cells. For treating aniridics they can be taken from donor corneas or from the patients own mouth. This talk explains more and what has been achieved so far..

More details and video of Alex and Victoria’s talks

Emerging molecular therapies for aniridia

By: Prof Colin E. Willoughby

Professor Colin E. Willoughby’s session was a three part talk addressing the ocular features and common clinical problems in aniridia, the genetics of aniridia and new molecular treatments for aniridia.

More details and video of Professor Willoughby’s talk

Living with aniridia – A generational perspective

By: Mary Cox

mary150 Mary Cox, her father, and her two daughters were born with aniridia. This year, 2014, is the centenary of her father’s birth. In the past 100 years understanding and treatment of the condition has improved greatly. But people still have to deal with the consequences that aniridia has on their daily life. The focus of Mary’s talk was the impact that aniridia has had on her whole family, lessons they have had to absorb, changes they have had to accommodate, and some practical tips that hopefully helped others.

The recording of Mary’s talk is available exclusively to ANUK Members. If you need the password contact us.

Guide Dogs – Sighted guiding and general mobility

By: Rick Allbrook

Rick Allbrook from Guide Dogs for the Blind Association (GDBA) spoke about GDBA’s role as a mobility charity and a new service called MyGuide.

Annual General Meeting

By: Sarah Hargraves – Aniridia Network UK Secretary and Trustee

People at tables watching a speaker at a podium and others seated as a panel A formal meeting where the ANUK trustees present their reports and update members on the previous year. These reports include the financial records of ANUK, fundraising activities and other activities designed to raise general awareness of ANUK. It was an opportunity to ask the trustees questions and put forward suggestions for future activities and fundraising.

Fundraising

By: Liz Atkinson

An informative and lively session aimed at getting members involved in fundraising for Aniridia Network UK. Attendees gained a better understanding of ANUK’s need to reach our target of £4,500 by March 2015. ANUK appreciates your input and ideas on ways to raise funds, enthusiasm and help.

Question & answer session

Mary, Amanda, Veda, Victoria and Jenny

By: Panel of experts and individuals affected by aniridia

The query that you always remember on the way home from your appointment? A non-medial question that you’ve always wanted to ask, but there never seems to be the right time? The Q&A session was your opportunity to ask that burning question..

More details and video of the Question & Answer session