The charity began in 1984 and was called FISH (Family Information and Self Help). It was then registered as a charity called the Retinoblastoma Society and a company limited by guarantee in 1987. In 2004 it changed its name again to the Childhood Eye Cancer Trust, with the strap line Fighting Retinoblastoma.
In 1996 the first paid position of national co-ordinator was created and the charity also paid for a play specialist for one day a week at the retinablastoma (Rb) clinic for examinations under anaesthetic (EUA). The co-ordinator role grew and was then split to create two full time posts, the other being family support worker. As the charity has grown, so has the range of its activities and the number of staff now totals six.
When the charity began, its management committee (directors/trustees) was made up from willing helpers affected by Rb and those involved in the treatment and care of children. With the appointment of a chief executive rather than national co-ordinator, the last five years has seen a transition from a hands-on management style to governance, with greater emphasis being placed on the skills each member of the board can bring to the charity.
When the charity made its first salaried appointment it was gifted the use of a very small office by St Bartholomew's Hospital. This continued to be the case until 2007 when the space was outgrown and new premises were acquired, for which rent and other overheads are paid.
The charity's original aim was to help children with Rb. 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 the charity to begin raising awareness with its 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.
The three core aims of support, awareness and research have remained constant and after its first Strategy Day in 2006, the trustees deemed that these should continue to form the bedrock of CHECT's aims and that influencing should be added to the list in order to bring about improvements to the service and the environment within which the service is delivered.
In recent years the Childhood Eye Cancer Trust has acquired a part-time fundraiser, part-time information officer, two part-time support workers and a full time administrator. The chief executive's post is now a full time position.