History of the Childhood Eye Cancer Trust

1984

In 1984 Janet and Pelham Allen’s then two-year old son David was diagnosed with retinoblastoma.  During this time Janet and Pelham set up the David Allen Retinoblastoma Appeal to fund research into retinoblastoma, and raised an incredible £250,000.  

1984

in 1986 when all parents attending Moorfields were invited to meetings to hear about the possible formation of a society (FISHS – aka Family Information and Self Help Society).

The response was overwhelming and ideas for fundraising, support and communication via newsletter abounded.

1987

We later registered as a charity called The Retinoblastoma Society and a company limited by guarantee in 1987.

1994

In 1994 the David Allen Retinoblastoma Appeal merged with the The Retinoblastoma Society. Without this huge injection of funds and Janet and Pelham’s commitment CHECT would almost certainly not exist in the format it does today. Their au-pair even created the child in the eye logo that the charity still uses!

1996

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 retinoblastoma 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.

2004

In 2004 we changed our name to Childhood Eye Cancer Trust. As we’ve grown, so has the range of our activities and we now have ten 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 retinoblastoma.

2007

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 CHECT to expand. 

Today

We are still the UK’s only charity dedicated to supporting children and families affected by retinoblastoma. CHECT offers comprehensive support, from diagnosis through treatment and beyond, providing specialist guidance to all families affected. Our support workers, integrated with NHS clinics in Birmingham and London, ensure consistent care throughout the long treatment process. We also run Family Support Days and events for teenagers and young adults to help combat isolation and boost mental health.