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… Alex Hutchison

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… Karthikeyan Ekambaram

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… David Benford

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… Secretary – Tom Kenning

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… Chairperson – Will Newman