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, making decisions about what the charity does in line with its governing document. Each trustee is also responsible for a set of activities and any volunteers involved with doing them.
Learn about being and how to become a trustee.
Katherine “Katie” Atkinson – Chairperson / Head of Services and Knowledge
Has aniridia: Yes (sporadic)
Home town: Sheffield
Phone: 07792 867949
Born and brought up in North Yorkshire. I grew up with partial sight due to sporadic aniridia and nystagmus, also developing glaucoma during my teens. I attended mainstream school and my low vision did not stop me from being an avid reader, riding my bike around the country lanes with my brothers and gaining my green belt in karate. I studied Physics at university in Durham and later London. I then moved to Sheffield to study for my PhD and have lived here with my partner ever since. I now work in technical customer support for a global software company which makes products used by engineers for 3D design and simulation. During my 20s I developed aniridia keratopahy and so I am now registered severely sight impaired. I still enjoy a good audiobook, my other hobbies include yoga, pilates and walking in the local countryside.
As Chairperson I run trustee board meetings and am responsible for overseeing the individuals performance. I often represent the charity at events and in the media.
As Head of Services and Knowledge I publicise my contact details so am often the first point of contact for people getting in touch with Aniridia Network. I manage how we deal with enquiries from people with aniridia, their families, other voluntary organisations, doctors, researchers and journalists. To do that I work on improving the information Aniridia Network holds and publishes.
James Buller – Head of Communications and Membership
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 had a career in digital media for non-profit organisations. I have worked for a students’ union, Citizen Advice Bureaux, Big Lottery Fund. I now specialise in accessibility of website in the Civil Service.
For 12 years I volunteered for Nightline – the confidential student support service. This included: taking helpline calls and managing the website. I then turned the national association 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 repeating and extending this at Aniridia Network.
I am registered visually impaired with acuity about of 6/36 (20/120) and some nystagmus. In 2015 I lost sight due to cataracts in both eyes to the point that I used a white cane. After surgery, my sight returned to what it once was. I use a monocular and magnification on computers. I have taken drops to tackle dry eyes and reduce keratopathy for a several years.
Day-to-day as Head of Communications and Membership I manage our online presence including this website, email newsletters and social media plus our behind-the-scenes technology. I lead on recruiting new members and properly maintaining our data about them.
I’ve laid good foundations for the organisation’s future though projects to establish a contacts database, brand and charity status. I’m also part of the team organising the big annual conferences.
Andy Baghurst – Treasuer
Has aniridia: Yes (familial)
Home town: St Neotts
I was born in Manchester but grew up in Birmingham. I have aniridia (which I inherited from my mother), nystagmus, foveal and optic nerve hypoplasia, and some cataract. I am registered severely visually impaired.
I initially attended a specialist school but moved into mainstream education when I was 9 years old.
I attended a grammar school in Birmingham before going to the University of York where I studied Mathematics. Since leaving university I have worked in finance in the Civil Service, at both the Department for Work and Pensions and now the Department for Transport. I am a Chartered Management Accountant.
I live in St Neots, Cambridgeshire with my wife and two sons (one of whom has aniridia). I enjoy spending time with my family, keeping up to date with current affairs, attending church, cooking and travelling.