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…

Chairperson – Neil Sugden

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.

Secretary – Ami Froehlich

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 currently work as a primary care mental health worker for Lancashire Care NHS trust, which involves facilitating guided self help interventions for patients with anxiety and depression. As a young adult living with cystinosis I feel I have a lot to offer the Foundation, from both personal experience and knowledge, as well as skills I have gained from my professional career.

Trustee – David Benford

Joined: January 2009

I am the doting father of Darcy. She was born in 2001 and was diagnosed at 10 months with cystinosis. Darcy is particularly lucky as, by sticking to a strict regime of medication, she is rarely sick and takes all her drugs orally. She is a patient of Birmingham Children’s Hospital, who do a fantastic job for her. I am a digital forensic investigator, cyber-threat specialist and company director. I am also an associate lecturer at the University of Derby, teaching in the School of Computing & Mathematics and the School of Law. I enjoy running and keeping fit. I enjoy my work with the Foundation and my primary role is to look after publicity.

Trustee – 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, I am very grateful to my Mum for donating a kidney. In 2013 I was given the chance to become a trustee, a position I was very happy to accept given that I am keen to help in any way I can. The main focus of my role is that of the day to day running and long term management of the charity’s website. I recently graduated from Staffordshire University with a degree in web design, so looking after the website is a perfect fit for me.

Trustee – Neil Hutchison

Joined: January 2012

I became a Trustee of the Foundation in early 2012, about a year after my daughter Morven was diagnosed with cystinosis aged 9 months, since when she has benefited from the (thankfully infrequent) care of the good people at Edinburgh’s Sick Kids Hospital. I live in the Scottish Borders and work in Edinburgh for an investment management company. My spare time is spent enjoying Morven’s outstanding banter with my wife Alex, as well as running and watching live music. I have have recently changed roles to become the treasurer, although I still take an active interest in all aspects of the Foundation’s activities.

Trustee – Ranjit Seehra

Joined: January 2012

I live in Derby and am dad to two children with cystinosis, Eeshar and Avneet, and their elder brother, Raj, who is not a sufferer. My wife and I became involved with the Cystinosis Foundation when it was founded in 1999 after Eeshar was diagnosed. Over the years my wife, Satinder, has been editor of the newsletter and I have done some fundraising, so we are really pleased to be involved closely with the Foundation once more and hope to help move the work of the Foundation in exciting new directions! I have been given the task of putting together a database on worldwide research being undertaken on Cystinosis and so if you know of any then please let me know.

Advisor & Founder – Jonathan Terry

Established The Cystinosis Foundation UK In: March 1999

I launched the Foundation in 1999, having been motivated to set up a support group for cystinotics in the UK after attending a meeting of the US Foundation and talking to its founder. I also consulted the leader of CLIMB, herself a mother of a cystinotic, who agreed that it was time for a separate organisation for cystinotics. Since its formation, I have been the central organiser and dealt with hundreds of enquiries from patients and families.

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