Trustees

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

KatieHas aniridia: Yes (sporadic)
Born: 1983
Home town: Sheffield
Email: katie.atkinson@aniridia.org.uk
Phone: 07792 867949

About Katie

I studied for a PhD in Physics/Electrical and Electronic Engineering. I was born with sporadic aniridia and also have nystagmus, cataracts, glaucoma and aniridic keratopathy. I am registered sight impaired. I live in Sheffield with my partner. My hobbies include ice skating, walking and listening to audio books.

Katie’s role

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.

I also lead on our relationship with professionals including internationally by sitting on the Board of Aniridia Europe.

James Buller – Chief Executive / Head of Communications and Membership

James

Has aniridia: Yes (sporadic)
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 had a career in digital media for non-profit organisations. I have worked for a students’ union, Citizen Advice Bureaux, Big Lottery Fund and 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 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 repeating and continuing this process 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’ve used drops to aid dry eyes and reduce keratopathy for a few years.

James’s role

As Chief Executive, I lead and coordinate the activities of others. I allocate tasks, track progress and help volunteers achieve our goals. I’ve laid good foundations for the organisation’s future – in particular, its database, brand and governance.

Day-to-day as Head of Communications and Membership I manage our online presence including this website, and social media plus our behind-the-scenes technology.

In past years I’ve also been on the team organising the big Aniridia Network annual conferences.

I’m keen to find ways for more international cooperation on aniridia issues

Eleanor Burke

Eleanor

Has aniridia: Yes (sporadic)
Born: 1952
Home town: London/Dublin
Email: eleanor.burke@aniridia.org.uk

About Eleanor

Eleanor attended St Mary’s School for the Blind, in Dublin. She trained at the Royal National Institute of the Blind (RNIB), School of Physiotherapy and then worked in that profession at University College Hospital, London. She had a particular interest in the treatment of adults and children with neurological conditions including cerebral palsy. Later she studies for degrees in remedial professions, social science and law.  She is currently working towards a Masters in Laws (LLM). Eleanor organised our first meeting of members in Ireland.

Sarah Matthews

Sarah, woman with blond hairHas aniridia: Yes (sporadic)
Born: 1967
Home town: Caergwrle, Wales
Email: sarah.matthews@aniridia.org.uk

About Sarah

I have lived with aniridia for over 50 years and am the mother of 2 children who have
inherited aniridia from me. For me, aniridia is an important integral part of who I am
which I now embrace. I embrace it because it has positively contributed to me becoming
the strong, resilient, independent, super problem solving and some might say bolshie! (but I prefer wilful, persistent and determined) person I am today. I am a social worker by trade, so understand well how to support people to attain their rights and entitlements. I have worked in management roles in the voluntary sector for 14 years,
the last 8 of which have been in business development roles securing significant funding for charities.

Dave McKay

Dave McKay

Has aniridia: Yes (familial)
Born: 1968
Home town: Sittingbourne/Greenock
Email: dave.mckay@aniridia.org.uk

About Dave

I was born in Greenock in Scotland. I have aniridia, optic atrophy, nystagmus and cataracts. I attended boarding school in Edinburgh and college In Birmingham.  I studied business and telephony, and have worked in retail, tourism, hospitality and financial services.

I volunteered to be Conference Offer in the summer of 2017 and lead the team forward for both the 2018 and 2019 Aniridia Network conferences. I seek out accessible venues for the conference and liaise with patients and professionals plus to ensure that a wide range of appropriate topics are covered for the widest possible audience.

My hobbies include swimming, walking, theatre, comedy and police dramas/films.

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