Who are we? What do we do?
We are volunteers elected by the members of Aniridia Network each year at its annual general meeting. Together we form the Trustee Board which is responsible for running Aniridia Network UK, making decisions about what the charity does.
If you are interested in being a trustee read how to volunteer.
Katherine “Katie” Atkinson – Chairperson
Has aniridia: Yes ( sporadic)
Home town: Sheffield
Phone: 07792 867949
I studied 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.
As Chairperson I am responsible for the overall running of ANUK. and coordinating the work of the board I publicise my contact details on behalf 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 team member.
My main aims are to 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.
Nigel Holdstock – Treasurer
Has aniridia: Yes (sporadic)
Home town: Eastborne
I have aniridia and grew up when aniridia wasn’t that well-known about, especially the genetics’ and before the cosmetic implantation of the aniridic lens. I went to a visually impaired school and followed a career in recruitment, programming and now accountancy, where as a part qualified accountant I run my own business in recruitment and business consultancy, covering a wide spectrum of accountancy from payroll to management accounts, budgeting/forecasting to final accounts.
With such a diverse career, I’ve been able to adapt to the obstacles of both career and personal life as a matter of challenge rather than defeat and have been in a position where I can recognize the needs and aspirations of the visually impaired person, as such am able to be pro-active and utilise my experience in the support of the needs and requirements of a visually impaired person, having been though the challenges already.
I have a wide and diverse experience of working with/alongside ethnic, disabled, special needs & social class individuals / groups of one disability or another, within either employment (recruitment) to charitable organisations such as Canterbury Lions Club, Brighton Society for the Blind, East Sussex Association for the Blind, and Lark In The Park (special needs charity) being pro-active in the programmes/events, fundraising/fundraising events to administration, treasury and computer systems development and client user training.
As Treasurer I am responsible for keeping the accounts, raising money and ensuring our money is spent wisely.
My interest / willingness to become a member of the trustee board, is to continue my support in helping others who are generally disadvantaged to mainstream life and promote the principle of ‘ability not disability’. In addition, I am able to pass on first-hand the university of life as a person with aniridia and the understanding of others with the same condition. In relation to being part of the charity, with my business acumen help ensure that its, core principles are fulfilled and to the highest standard.
Sarah Hargraves – Secretary
Has aniridia: Yes (familial)
Home town: London
I have aniridia. Over the years I have benefited from the support group by sharing experiences and information with other members of Aniridia Network UK.
In this spirit I feel it is time for me to ‘give something back’ – by being a trustee. I believe that I can fulfil the role because I am organised and have previously acted as secretary to a parochial church council. Also for some time I have worked with members of trustee bodies as part of my job. I have worked as a communications consultant and believe that the skills I gained through that role would benefit Aniridia Network UK.
Has aniridia: Yes and WAGR/11p deletion syndrome (sporadic)
Home town: Exeter
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, nystagmus, 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.
As WAGR/11p Deletion Syndrome Officer, I am also 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 Aniridia Network UK 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.
Has aniridia: Yes (sporadic)
Home town: London
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 volunteered 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.
I am 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.
Has aniridia: No
Home town: Northallerton
I am the mother of Katie, 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 retired from my position as Placement Officer for the School of Computing at Teesside University where I was responsible 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.