Trustees

Who are we? What do we do?

We are a group of volunteers elected by the Aniridia Network UK membership each year at our AGM. We are responsible for the running of ANUK, making decisions about what ANUK does and also doing much of the work ourselves. If you are interested in joining the committee please contact us.

Katherine “Katie” Atkinson – Chairperson

Condition: Sporadic aniridia
Born: 1983
Home town: Sheffield
Email: katie.atkinson@aniridia.org.uk
Phone: 07792 867949

About Katie

I am studying for a PhD in Physics/Electrical and Electronic Engineering at the University of Sheffield. I was born with sporadic aniridia and also have nystagmus, cataracts, glaucoma and aniridic keratopathy. I am registered partially sighted. I live in Sheffield with my partner. My hobbies include ice skating, walking and reading.listening to audio books.

Katie’s role

As Chairperson I am responsible for the overall running of ANUK. and co-ordinating the work of the executive committee  I publicise my contact details on behalof of ANUK so I often act as a first point of contact for many people getting in touch with ANUK. I deal with enquiries from people with aniridia, their families, other voluntary organisations, doctors, researchers, journalists and either dealing with an enquiry myself or passing it on to the most appropriate committee member.

My main aims for the upcoming year increase the amount of useful information ANUK publishes. Initially this will be by greatly improving the content of our website to provide information on the questions we are most frequently asked. I will seek out professionals to write and/or check over much of this information to ensure it is up to date and correct.

Craig Anyon – Treasurer

Condition: Sporadic aniridia
Born: 1983
Home town: Llanfair Caereinio, Wales
Email: craig.anyon@aniridia.org.uk

About Craig

I live in a little village in Wales where I spend most of my time due to no public transport. I also have nystagmus and cateracts. I am registered partially sighted. My hobbies include video games and socialising online.

Craig’s role

As Treasurer I am responsible for keeping the accounts, raising money and ensuring our money is spent wisely.

WAGR Representative – Jenny Langley

Condition: Sporadic WAGR
Born: 1982
Home town:Devon
Email: jenny.langley@aniridia.org.uk

About Jenny

I currently live in Devon with my guide dog Jaynie. I was born with aniridia as part of WAGR syndrome. I have most of the associated eye conditions that go with aniridia, including cataracts, glaucoma, nystamgus, corneal thickness/scarring and have had numerous surgeries over the year mostly for glaucoma. I developed a Wilms tumour at 13 months old. I finished studying for a degree in education at the University Of Worcester and now have a job teaching touch typing to children with a visual impairment and complex needs. My hobbies include, reading/listening to audio books, walking with Jaynie, and socialising with friends.

Jenny’s role

As WAGR representative, I am the first point of contact for anyone wanting to know more about 11p deletion/WAGR syndrome, this includes professionals, or family members, or individuals. I provide people interested in 11p deletion/WAGR syndrome with information and support. I also act as a link between ANUK and the International WAGR Syndrome Association.

My aim is to help any individual or family to get in contact with other people who or whose child have/has WAGR syndrome. This year I plan to work with ANUK to provide a meeting for families affected by WAGR syndrome. I attended a WAGR weekend in American in the summer of 2010 and this has really spurred me on to helping families in the UK affected by WAGR to meet each other and share experiences. I also aim to continue to inform and update people in the UK about the latest developments that have come out of the National Institutes of Health study into WAGR syndrome and any other important developments about WAGR syndrome in general.

James Buller

Conditions: Sporadic aniridia
Born: 1979
Home town: London
Email: james.buller@aniridia.org.uk

About James

I’m a married, born and bred Londoner. Back in 1998 my web page describing my experiences was one of first about aniridia. It generated a lot interest from around the globe. I was glad to meet and help so many parents and other young people as a result.

Since then I have become a web developer experienced in communications and marketing for non-profit organisations. I have worked for Citizen Advice Bureaux, a students’ union and currently Big Lottery Fund. For 12 years I’ve been volunteering for Nightline – the confidential student support service. This included: taking helpline calls and managing the website. I then turned the organisation into a charity and became one of the trustees. From there I led projects to define its strategic direction and establish a new brand image. I am now repeating this process at ANUK.

I am registered partially sighted but have not had any complications such as glaucoma or cataracts.

James’s role

I don’t have a specific title but I see my role as helping to lay good foundations for the organisation’s future – in particular its communications, membership and governance.

Day to day, I manage our online presence including this website, Facebook and Twitter plus our behind-the-scenes tools.

This year I will be working towards improving how the organisation stores and uses data about people with aniridia, and provides better services to them.

Liz Atkinson

Conditions: None (Katie’s mum)
Born:
Lives: Northallerton, Yorkshire
Email: liz.atkinson@aniridia.org.uk

About Liz

I am the mother of Kate Atkinson, one of the founder members of ANUK.  I am married to Kate’s father, Robin, an architect and we live in North Yorkshire. We had no family history or knowledge of aniridia and it was a steep learning curve as she grew up with both rewards and setbacks. I have two other grown up children, Guy and Harry who do not have aniridia.

I have just retired from my position as Placement Officer for the School of Computing at Teesside University  where I was resonsible for helping students to secure sandwich year placements in industry. I still have an active interest in the work experience and employment issues and act as a consultant for some computer games companies. I have a BSc in Political Science from the University of Southampton and have worked in retail management, commercial sales and adult training as well as my university experience.

My personal interests are  reading, (travel, biographies, history, novels – well anything really!) quizzing, gardening, walking and wildlife particularly birds. I am a real news and politics junkie. I am also involved in running the local flower show and a parish representative.

Beyond being a trustee I do not have a particular role within ANUK. But with more time since retirement I am hoping to be more active.