Our roots begin in 1984, when we were originally called FISH (Family Information and Self Help). We later registered as a charity called The Retinoblastoma Society and a company limited by guarantee in 1987.
The retinoblastoma society logo
Extending our reach
In 1996 the first paid position of national coordinator was created and we also paid for a play specialist for one day a week at the retinoblastoma clinic for examinations under anaesthetic. The coordinator role grew and was then split to create two full time posts, the other being family support worker.
When the charity began, our management committee (directors/trustees) was made up of willing helpers affected by Rb and those involved in the treatment and care of children. With the appointment of a chief executive came a transition from a hands-on management style to governance, with greater emphasis on the skills each member of the board can bring to the charity.
When we took on our first paid member of staff, we were gifted the use of a very small office by St Bartholomew’s Hospital. We were there until 2007 when the space was outgrown and new premises were acquired, for which rent and other overheads are paid.
Our original aim was to help children with retinoblastoma. This was done by families affected by Rb sharing experiences and information, and supporting new families. Some years later it merged with the David Allen Retinoblastoma Appeal, whose sole purpose was to fundraise for research. A generous donation enabled us to begin raising awareness with our Mug a GP campaign. Coffee mugs, with a list of Rb signs to look out for, were sent out to all the GPs in the UK with the hope that the message would get through as they sipped their coffee.
In 2004 we changed our name to the Childhood Eye Cancer Trust. As we’ve grown, so has the range of our activities and we now have eight members of staff.
The three core aims of support, awareness and research have remained constant and continue to form the bedrock of our work. We also added influencing to the list in order to bring about improvements to services for people with Rb.
For more information about our history, please have a look at our special 25th birthday edition of our InFocus newsletter.