CHILDHOOD EYE CANCER TRUST

What We Do

Retinoblastoma (Rb) is a form of eye cancer which affects children predominantly under the age of 5 and accounts for 3% of childhood cancers and 10% of all baby cancers; it is the most common eye tumour in children.  45% of cases are heritable and there is an increased risk of developing tumours in other parts of the body in later life.   We work in four ways to help children and families affected by the condition:

• Providing information and support to individuals and families affected by retinoblastoma
  • We employ two Family Support Workers who offer support, information and advice to families attending hospital retinoblastoma clinics for treatment;
  • Our growing team of Support Volunteers, who are parents with firsthand experience of the condition, offer a listening ear, helping people come to terms with the often bewildering and traumatic process of diagnosis and treatment;
  • Our informative website, newsletters and annual Members Day offer expert and up-to-date information;
  • We also provide small one-off travel bursaries to families experiencing financial hardship due to their child’s condition.
• Raising awareness of retinoblastoma, which is relatively unknown even amongst medical professionals; few parents are aware of the condition.   If children are diagnosed at an early stage, there is a greater chance that sight and eyes can be saved.  We work with the media and professionals, reaching parents and those working with babies and young children.
• Funding medical research so that improved techniques and treatments are available in future.

• Influencing professional bodies to ensure that retinoblastoma patients receive the best care possible.

The Childhood Eye Cancer Trust is a Registered Charity operating throughout the UK.  With a small team of one full-time and four part-time staff, as well as an extensive network of volunteers, we are committed to providing a high quality, but cost-effective, service to children affected by retinoblastoma and their families.   Distinguished researchers and practitioners serve on our Research Sub-committee, providing unparalleled expertise as is the case with our Trustee Board; three quarters of the Board have personal experience of this condition and understand the impact of living with visual impairment, blindness or later effects of treatment.  In 2008/2009, the charity’s total expenditure was just £244,379.

How We are Funded

Our income comes from a range of sources, with a high proportion raised through donations from our members, fundraising events, marathons and other sponsored activities.  A small number of trusts and foundations have contributed to our funds, we are also fortunate in receiving support from several companies; Barclays Retail Mortgages Division, Oasis Arts and Crafts group and Legal and General Insurance are notable in this category.  The majority of our income however comes from supporters events and we are delighted to include the Charley Mill Gala Shoot in this category. 

The Charley Mill Gala Shoot

Since being selected as co-beneficiary of the Gala Shoot, the Childhood Eye Cancer Trust has used the funds raised with the permission of the committee, to help children affected by this rare condition.  Funds raised through the Gala Shoot have been used to purchase a cryotherapy machine for children treated at Birmingham Children’s Hospital, one of the two treatment centres for Rb (the other is the Royal London Hospital). Cryotherapy machines use extreme cold temperatures and treatment to freeze tumours.  This equipment has been successfully introduced into the Rb service and already been instrumental in several children’s treatment.

Other activities funded by the Gala Shoot event include a hugely successful awareness raising campaign which was launched to educate new parents about the condition and its symptoms.  A feature in parenting magazine; “Bounty”, promotes the possible warning signs of retinoblastoma and invites those concerned to get their children checked by a GP or an optician.  This campaign (see copy attached) went out to 98% of all new parents in the UK.  This knowledge is vital as all too often diagnosis is delayed or missed due to lack of awareness.  Late diagnosis can result in the removal of an eye or in some cases both eyes.