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Day-to-day management of the Albinism Fellowship is handled by the board of trustees.
you wish to contact any of the trustees, please see the contact details on the Get In Touch page.

 

Akeel Bari

 

Helpline Coordinator

My wife and I became members of the Albinism Fellowship in 2008 after the birth of our son who has Albinism. Our very first event was the London BBQ, this was the first time that we had the chance to meet other families and what a great day we had. We gained lots of support, had a great chat with lots of useful information and most of all, met great people. We have not looked back since.

I joined the Trustee Board in 2014 and have responsibility for responding to messages left on our Helpline number and for supporting fundraising.

After completing my BSc Degree in Technical sciences in 2000 I have worked in a variety of roles. I am based in London.

Joanne Bennett

Treasurer

My husband Andrew and I joined the Albinism Fellowship in 2007 when 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 run my own business in the care sector. I previously work as a trainer helping improve the skills of sales people who work for a major pharmaceutical company. I  draw on my training, coaching and sales and marketing skills to support the Fellowship. I am based in Nottingham

Rosaleen Dempsey

Ireland Coordinator

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. I am based in Belfast.

 

 
 

Daniel Hill

Online Co-ordinator

I have been a member of the Albinism Fellowship since I was two years old, along with my mother Hilary and younger brother Martin who also has albinism.

In 2001, I  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.

I currently work as a software developer for CME Group and, in my spare time, volunteer for the London Transport Museum.

 

Karina Lang

 

Conference Organiser

I have been part of the Fellowship since I was a baby, and became a Trustee in 2017. As the youngest trustee I like to think I keep the Fellowship ‘on trend’ and up to date with the latest fashions and event ideas.

I am all about the events, logistics and planning. If you would like to run an event for the Fellowship do get in touch. My main role as a Trustee is to organise our big conference held every two years.

After completing a degree in events management, I now work for the Royal Microscopical Society, organising educational courses.

I love a challenge and trying new things, past activities including canoeing, hiking, baking and most recently playing Goalball.

 

Roselle Potts

Chair

I  joined the Albinism Fellowship in 2011. I have a daughter with Albinism ( born 2008). As a family we attended a few Fellowship events including a conference in Blackpool. We met lots of lovely people on the same journey and felt really welcomed and supported.

I joined the Trustee Board in 2015 and became Chair of Trustees in 2017. My role on the Trustee Board is to organise and run our meetings and lead our endeavours.

With my husband I  have been a foster parent for many years. I also worked as a solicitor in Law Centre for 15 years and  bring this experience to the Trustee Board. I am based in London.

Kristina Venning Rose

 

AF Life Magazine Editor

I have been a member of the Fellowship for most of my life and have been active for many years in the Albinism community.

I was a Trustee before having my children and rejoined the Board in 2018. My main responsibility is as editor of our magazine.

I have worked in TV production, the charity sector and currently do freelance media work . I live  in London with my husband and 2 young children.

Pinar Erder

 

Membership Coordinator

I have a son with  OCA1 Albinism. He was born in 2002 and our family moved from New York to London in the same year. One year after moving to London, our  family joined the Albinism Fellowship. Since then I have been working locally to support  children with albinism; advising families and schools.

In 2016 I helped the fellowship by working as the editor of Albinism Life magazine. I joined the Trustee Board in 2017 . My main role is to increase the Fellowship’s membership.

Before having children I worked as a computer engineer/scientist for fifteen years.
When my second boy was born, I joined the governing body of my children’s Primary School as the SEN Parent Governor for four years . I also worked at several secondary schools as a part-time Maths teaching assistant.

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