Joined: March 2026 I am a Project Engineering Manager, working in the water sector based in Manchester. My son was diagnosed with Cystinosis in 2022 at 18 months. Since diagnosis, the foundation has been a… Bradley Pearson

Joined March 2026 I am a dedicated medic and passionate advocate for the cystinosis community. Through my involvement with the Alder Hey Kidney Fund, I work to support children and families facing kidney disease. As… Kevin Burgess

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