Trustees

My husband Andrew and I joined the Albinism Fellowship about three years ago after our eldest daughter was diagnosed with albinism a few months after her birth.
The diagnosis came as quite a surprise, and it was a considerable relief to find there was a group of friendly, warm and knowledge people out there who had dealt with the same issues and could provide a practical support network. We officially joined the Albinism Fellowship 'family' in 2009 at the busy Chester conference, which was a great opportunity to meet other families, make friends, network and become part of something special.
After our second daughter was born in 2010, also with albinism, I decided I would like to become involved with the charity on a more formal basis and was pleased to become a trustee in 2011. I currently work as a trainer helping improve the skills of sales people who work for a major pharmaceutical company so will be drawing on my training, coaching and sales and marketing skills to support the Fellowship. Before this, I worked in a variety of sales roles for the industry.

I have been the Albinism Fellowship contact person for Northern Ireland since 2005 and a trustee since 2007/8. I featured in the Real Lives book published by Albinism Fellowship in 2005 and have taken part in subsequent work to raise a positive awareness of albinism as part of the media advocacy group. I work for RNIB NI as Children and Youth Service manager, providing services and activities for blind and partially sighted children, young people and their families.

We have been members of the Albinism Fellowship since our eldest son was diagnosed with albinism at 6 months of age in the late '90s. The support given to us both at the first conference in York was invaluable. Mixing informally with other families who had children with albinism as well as young adults and parents with albinism gave us practical knowledge we were unable to find elsewhere.
I was pleased to become a Trustee in 2010 and hope to bring some of my work skills to the Board; I have worked in the water and renewables sector for the past 20 yrs and currently manage a 2MW anaerobic digestion business.

Daniel has been a member of the Albinism Fellowship since he was two years old, along with his mother Hilary and younger brother Martin (who also has albinism).
In 2001, Daniel took on responsibility for maintaining the Fellowship’s website and in 2009 became a Trustee with responsibility for the Fellowship’s online presence (which, alongside the website, also includes social networking sites and the online discussion forum).
Daniel currently works as a software developer for CME Group and, in his spare time, volunteers for the London Transport Museum.

Hilary has been involved with the AF for many years. She is the proud mother of Daniel & Martin - joining when Martin was 6 months and Daniel was 2. Both have albinism and have both proved that it does not hinder obtaining a good qualification and career. Initially Hilary took over the running of the London group and then took up the role of membership co-ordinator in general. Her responsibilities include maintaining the membership database and subscriptions. She is also co-editor of the bi-annual magazine, Albinism Life.
Hilary trained as an electronic engineer and now teaches various engineering disciplines at a local sixth form college. Computers and IT have always been a big part of her life and both sons, unsurprisingly, qualified and work in this industry.

Martin has a daughter with albinism and is a secondary school teacher of Geography. Along with Hilary he edits the Albinism Life Magazine and responds to questions about education matters raised by members with help from his wife Karen, who is also a teacher. Martin is currently Chair of the Fellowship.

Mark has been a very active committee member since 1995, first as Secretary and then as President/Chair. He is now the Fellowship's Conference & Events Co-ordinator and has been instrumental in developing our bi-annual conferences. In addition he has become Interim Treasurer until the post can be filled. Mark has a busy job as a senior manager with RNIB, from where he brings a lot of relevant experience to the fellowship. He is director of a special school for children and young people with sight loss and complex needs. Mark is married to Lorna (also a committee member) and has a son, Edward, who was born in 2008 and also has albinism.