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

Has 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

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

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.

Martin Fleming – Head of Volunteering and Development

Has aniridia: Yes (familial)
Born: 1970
Home town: Great Yarmouth
Email: martin.fleming@aniridia.org.uk

About Martin

My background is in computing and telecoms as a software designer and tester but after being made redundant in 2001 I made a career change in to health and nutrition coaching.  This lead on to me becoming a life and business coach where I have helped people in areas of career, parenting, health/weight loss and coaching young people.  I also do ability coaching which is working with disabled people to help them achieve their goals and believe that there are no limits in what they can achieve.  I’ve done a lot of volunteer work in the UK and in Ireland with children, young people and parents either as a mentor/coach/facilitator relating to employment and training.

In my spare time, I enjoy time with my young son, sci-fi and keeping fit or sports like judo. I like  and reading and events about personal/professional development

I’m registered severely sight impaired but before I was 16 years old I had some vision but lost the rest after that.  I also have nystagmus and glaucoma.

Martin’s role

As Head of Volunteering and Development I oversee:

• volunteers
• fundraising
• training and mentoring

This involves building, developing and managing a volunteer and fundraising teams. As part of this, I look out for opportunities to grow people and teams and identify new opportunities.  I also am responsible for identifying training that would be beneficial to other team members either externally or by way of developing internal resources.  Lastly, my role is to help build and manage a mentoring service/process especially for volunteers who wish to take on roles for the first time.

Emily Nash – Treasurer

Has aniridia: Yes (sporadic)
Born: 1977
Home town: Cardiff
Email: emily.nash@aniridia.org.uk

About Emily

I qualified as a physiotherapist and now work as a Clinical Quality Manager for a national private rehabilitation company. I have two small children who both have aniridia and I live with them and my husband just outside Cardiff. I love the countryside in Wales and have a mountain view from our house. I enjoy spending time with my family and getting outdoors as much as possible.

I decided to volunteer for Aniridia Network as I wanted to meet more people with the condition. Prior to my son being born in 2014 I had not met anyone of a similar age who had aniridia. This role will also give me the opportunity to learn more about the running of the charity and offer me the opportunity to learn new skills that will be good both for my own personal development and my career.

I have sporadic aniridia and was registered severely sight impaired in 2016. I’ve had glaucoma for over 10 years that has been controlled with medication. I have had surgery for cataracts and a stem cell transplant on my cornea.

Emily’s role

I oversee the finances of the charity in line with good practice, our governing documents and legal requirements. I ensure that effective and appropriate financial controls and procedures are in place, and followed. I manage budgets, accounts including expense claims. I also play a role in fundraising activities.