The 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…
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.
Joined: January 2012
I was born in 1985 and I have nephropathic cystinosis. Thanks to the development of cysteamine therapy in the 80s I did not have my kidney transplant until 2009, which I received from my mum. I obtained a BSc degree in psychology in 2007 and since then have pursued a career in mental health. I have previously worked in the NHS as a Psychological Wellbeing Practitioner as part of a talking therapies service. In 2016 I left the NHS and started a new role as a mental health advisor working in student support services at the University of Central Lancashire.
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.
Joined: February 2020
I am 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.
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.
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.
Joined: January 2009
Hi. I am Neil Sugden. I was diagnosed in 2006 with non-nephropathic (ocular) cystinosis. I found the Foundation extremely helpful and supportive when I contacted them for information about the condition. I now hope I can give something back to the Cystinosis Foundation and help others who suffer from this rare condition.
