About the Charity

1. The Childhood Eye Cancer Trust was incorporated as The Retinoblastoma Society in 1987 and changed its name in 2003. It also uses the acronym CHECT.

2. The Childhood Eye Cancer Trust has three main aims:

• To provide information and support to individuals and families of children with retinoblastoma.
• To raise funds for research projects specifically related to retinoblastoma.
• To raise awareness of retinoblastoma amongst the public and health professionals.

3. CHECT has over 850 members and employs four people: a Chief Executive, an Operations Manager, a part time Family Support Worker, a Support Worker & Information Officer. It is a registered charity number 327493 and a company limited by guarantee no 2143917. It currently has 13 Trustees and we have 50 vounteers working for us.

4. Key achievements are:

• Raising awareness. Click here to find out more about our awareness campaigns.
• Funding research to develop tests which enable the identification of the gene by comparing blood samples from parent and child, thus eliminating the need for unnecessary eye examinations under anaesthetic if the child is found not to be a carrier.
• Funded a Play Specialist for the clinic, until it was undertaken by the hospital trust, thus demonstrating the importance of play as a means of preparation for children undergoing procedures in hospitals. The appointment of a Play Specialist has since been made in several other hospitals internationally.

5. Main activities:

• Supporting families with information and advice via its website, newsletter and personal contact at the hospitals, by phone and email.
• Creating networks of families, called Family Contacts, who are willing to support newly diagnosed families through the difficult early days. It provides training and support to Family Contacts.
• Organising an annual meeting of families and professionals with speakers and panels and play facilities for the children.
• Mailing out posters and other information about the condition to health professionals around the UK in order to raise awareness of the condition. Being very rare, the condition is often missed because of lack of familiarity with the symptoms.
• Distributing an awareness raising poster through out the UK and Ireland aimed at spreading information about the signs of retinoblastoma to the general public.
• Engaging in press and media activity in order to raise awareness amongst the public and to give them confidence to get unusual symptoms checked by their doctor or optician.
• To raise funds to research into various aspects of retinoblastoma. CHECT has recently funded a study into the incidence of Second Primary cancers. Some research into the genetics information previously given to retinoblastoma patients will commence in the summer.
• To raise funds for all of the above.
• All our funding comes from donations and events organised by our members and supporters. Our current turnover is approaching £200,000.