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Trustees

Cystinosis Foundation UK has a board of trustees who meet on a regular basis to discuss recent events, future strategy and how best to utilise our resources to their greatest benefit.

The board all have different backgrounds, experiences and skills that help them to steer the Foundation as a collective in order to fulfill our aims. All have different connections with cystinosis. And all give their time freely.

However, it is best to let them introduce themselves…

Chairperson – Will Newman

Joined: February 2020

My granddaughter, Ellie, was diagnosed with nephropathic cystinosis in 2016, just after her 1st birthday. Her twin sister, Molly does not have the condition. I’m a retired librarian and am keen to help the charity in any way I can. I’m currently the link person with Cystinosis Network Europe and the worldwide Community Advisory Board.

Secretary – Tom Kenning

Joined: February 2014

I have nephropathic cystinosis and am a patient of the Queen Elizabeth hospital in Birmingham, where I had a kidney transplant in 2008, The main focus of my role is that of the day to day running and long term management of the charity’s website. In 2014 I graduated from Staffordshire University with a degree in web design, so looking after the website is a perfect fit for me.

David Benford

Joined: January 2009

My daughter has cystinosis and is a patient of the Queen Elizabeth hospital in Birmingham. I am a company director and work in technology. I enjoy my work with the Foundation and my primary role is to look after publicity.

Karthikeyan Ekambaram

Joined: February 2020

I am a researcher in a Midlands based University. My son was diagnosed with cystinosis in 2018. I found that the foundation has been doing a fantastic work in supporting those who live with cystinosis and their families. I joined CFUK as a trustee in 2020 and I am delighted to contribute to this wonderful organisation.

Alex Hutchison

Joined: February 2020

My daughter, Morven, was diagnosed with nephropathic cystinosis in 2010, at 9 months old. As well as keeping busy looking after Morven and her younger sister and brother, I work full time in the data sector in Edinburgh. I am delighted to be a Trustee with the Foundation, with a focus on meeting our aims and making a real difference to those living with cystinosis and their families.

Tom Kelly

Joined: June 2025

My daughter, Eloise, was diagnosed with cystinosis in 2020, and is a patient at GOSH and Evelina Children’s Hospital. I’m a freelance musician based in Surrey. CFUK have been there for us as a family since diagnosis, and now it’s time to give back!

Avril Biss

Joined: June 2025

I am a kidney transplant recipient living with Cystinosis near Brighton. I have a huge variety of interests, from performing and singing, to weight training and arts and crafts! I recently started working for Kidney Care UK, which has been great to put my knowledge of renal, and experiences on dialysis to good use. I’m quite the free spirit and love to meet new people and try new things!!

Charity Status

  • Cystinosis Foundation UK is a UK registered charity — Charity No.1074885. For more information see: UK Registered Charities.
  • Cystinosis Foundation UK now has a board of seven trustees and in April 1999 achieved charity status. The Board of Trustees will always be made up of a minimum of three people who will meet on a regular basis.
  • The charity is self-funded through donations and also funds Cystinosis research projects at various academic institutes.

Please get in touch with us if you are interested in being a trustee.