The services provided by Aniridia Network UK are only possible because of the time and effort given by the wonderful volunteers  below and our trustees.  We can always do more/better though. So if you can help, read about how you can volunteer.


I manage our online presence including this website, Facebook and Twitter plus our behind-the-scenes technology.

James is also a trustee of Aniridia Network UK. Read James’s trustee profile for more details about him.


  • JennyRole: Enquiries and International WAGR Syndrome Association Representative
  • Has aniridia: Yes, and WAGR/11p deletion syndrome (sporadic)

I provide information and support to anyone wanting to know more about aniridia and associated conditions  This includes people who have the conditions, their family members and different kinds of professionals.

I also act as a link between Aniridia Network UK and the International WAGR Syndrome Association. I am very keen on helping families meet each other to share experiences. I also give updates about the latest developments regarding WAGR/11p deletion syndrome.

Jenny was once a trustee of Aniridia Network UK.


I sit on the board of Aniridia Europe to represent Aniridia Network UK.

Katie is also a trustee of Aniridia Network UK. Read Katie’s trustee profile for more details about her.


  • KeithRole: Database Officer
  • Has aniridia: Yes (sporadic)

I live on the border between South East London and Kent and enjoy going out and meeting friends. I work in web development for a central London based charity.

I use my experience of Salesforce to develop Aniridia Network UK’s contacts database. This helps us deliver more effective services and communications to members.


My husband and I have retired to Deal in Kent. I was a primary school/deputy head/early years advisory teacher in London for nearly forty years and loved every minute of it. I use this experience to provide advice on special educational needs. I enjoy gardening and singing.

We have always been extremely grateful for the support and advice we received from others when our only son was diagnosed.  So It has been extremely rewarding for us to be able to link people up through the Befriending Scheme.


I am a group leader at University of Aberdeen, and have spent much of the last 15 years researching the roles of PAX6 in eye development and disease.  I am a Public Engagement Officer for my research programme and enjoy the opportunities to make current research into aniridia and other eye conditions accessible to all those who are affected by or interested in the science of vision. I live on the coast, just south of Aberdeen, with the family (2 kids) and several stick insects.


  • Role: Head of Volunteering and Development
  • Has aniridia: Yes

My background is in computing and telecoms but made a career change into coaching. I’ve done a lot of volunteer work in the UK and in Ireland with children, young people and parents. I enjoy time with my son, sci-fi and sports like judo.

Before I was 16 years old I had some vision but lost the rest after that.  I also have nystagmus and glaucoma.


  • Role: Disability Rights Adviser
  • Has aniridia: Yes (sporadic)

I work as an adviser on the welfare state. I also have a law degree and have worked as a generalist advice worker. I have also prepared and delivered disability awareness training.

I have sporadic aniridia and a very rare combination of other eye conditions. I am registered blind and I only see areas of colour rather than any details.

I grew up in a time when children with a disability were still normally expected to attend a special school. I was fortunate enough to go to a very forward-thinking mainstream primary school but there was a lot of opposition to me attending a mainstream secondary school. I refused to be sent to a special school many miles away from home and fought to get into the local mainstream secondary school. This was a difficult time for me and I was told that I was not capable of passing any O levels. So I went on to obtain 8 O levels and prove them wrong.

After this I studied for my A levels and later went on to successfully study for a business and finance diploma, a diploma in social policy and criminology and a Bachelor of Laws degree. I am currently continuing my legal studies with the University of Law.

After working for a while in retail catering management I decided to move into advice work. I started as a generalist adviser in 1999 and later had the opportunity to specialise in welfare benefits when I got a job at Action for Blind People in 2005.

I have moved on from Action now but my work still mainly involves welfare benefits advice. However, sometimes my work also involves equality issues and writing and delivering disability awareness training.

I had a guide dog called Genna who retired some time ago.
Unfortunately I had to let her go to live with someone else but I am now waiting for my second dog and very much looking forward to the day when the right dog is found for me.

I choose to use a mobility aid (at the moment a long cane) because my disability is part of who I am regardless of how much I would like to be fully sighted and I do not believe in pretending to be something that I am not.


I grew up in the USA. When I moved to the UK I asked the aniridia community for help settling in. Aniridia Network UK did just that. Soon I was organising their 2012 conference. I enjoyed it so much that despite moving back to the states I still coordinated conferences remotely for the next three years!

Other volunteers

People who have helped us without a formal role title include:
Andrew, Ben, Beth, Charlotte, Claire, Eleanor, Francis, Glen, Hannah, Katja, Lois, Mark, Mary, Naomi, Peter, Sarah, Susan, Terrie, and Victoria plus all those who have written blogs and done fundraising for us.

Thank you all.


2 Responses to Volunteers

  1. Pingback: Review of Aniridia Network UK Conference 2013 | Aniridia Network UK

  2. Pingback: Heather’s story of an American in London | Aniridia Network UK

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