Trustees

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

Akeel Bari

Akeel Bari

Fundraising Co-ordinator

My wife and I became members of the Albinism Fellowship in 2008, this was after the birth of our son who was born with albinism. The London BBQ Event was our first meet which we attended, this was our 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, got lots of useful information, met great people and most of all, this gave our son the opportunity to meet others with the condition. Since then we have never looked back.
After completing my BSc Degree in Technical sciences, I went into full time employment and the opportunity arose to join the Board of trustee’s in 2014.

Joanne Bennett

Joanne Bennett

Treasurer

My husband, Andrew and I joined the AF in 2009 after the Chester Conference, when our eldest daughter, Jess, was 2 years old. After our second daughter, Becky, was born, also with OCA1a in 2010, I made the decision to become more involved with the intention that no new parent of a child with albinism should have as challenging a first year of parenthood as we did with Jess. I was opted to become a trustee and have held the post of treasurer since 2014.
The AF have become our extended albinism family and continue to provide support - emotional and practical on our scenic journey through parenting two girls!
On a professional level, I worked for a large pharmaceutical company for many years and I am currently co-owner and financial director of a homecare provider in Nottingham.

Rosaleen Dempsey

Rosaleen Dempsey

Ireland Co-ordinator

I joined the Albinism Fellowship in 2001 when I attended my first conference. It was my first opportunity to meet people with Albinism of my age and I loved it.
When I started working for RNIB in Northern Ireland in 2005 I wanted to promote the work of Albinism Fellowship to more people so I became the local contact person. I am now the Ireland co-ordinator for Albinism Fellowship and I help and support those planning events in Northern Ireland and the Irish Republic as well as linking with local media when required.
I am also the Children, Young People and Families Service Manager in RNIB in Northern Ireland. I am passionate about the power of peer support, bringing people with sight loss and their families together. I try to bring these skills to my role in Albinism Fellowship.

Pinar Erder

Pinar Erder

Secretary & Membership Co-ordinator

Pinar worked as a computer engineer/scientist for fifteen years before her son Ozan - who was diagnosed with OCA1 albinism - was born. In 2002, Pinar and her family moved to London from New York.
When Ozan started at primary school and her second boy was born, she joined the governing body of Fox Primary School as the SEN Parent Governor. She has completed four years as a governor and started to work at several secondary schools as a part-time Maths teaching assistant.
One year after moving to London, Pinar and her family joined the Albinism Fellowship. Since then she has been working locally to support the children with albinism; advising families and schools. Last year, Pinar helped the fellowship by working as the editor of Albinism Life magazine. As a trustee she will be working to expand the Fellowship’s membership.

Will Fellows

Will Fellows

Marketing Co-ordinator

From the diagnosis of my my eldest son with albinism at 6 months of age in the late ‘90s the Albinism Fellowship was an important element in family life. The support given from members of the at 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 Hill

Daniel Hill

Online & European Relations Co-ordinator

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.
Daniel currently works as a software developer for CME Group and, in his spare time, volunteers for the London Transport Museum.

Karina Lang

Karina Lang

Vice-Chair & Events Coordinator

I am all about the events, logistics and planning.
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.
I have been part of the Fellowship since I was a baby, and recently become a trustee. 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.
So If you have an events or planning related question, please do get in touch.

Roselle Potts

Roselle Potts

Chair

I am a Mum of six children ranging in age from 4 to 27. We live in South East London.
My 6 year old, Precious, has Albinism and we have really benefited as a family from the opportunities provided by Albinism Fellowship over the past few years.
I have worked as a solicitor for many years and also bring this experience to the Trustee Board.