Each month at WLM, we highlight a charity that is working to make our communities better. This month we talked to the Childhood Eye Cancer Trust. Retinoblastoma (Rb) is a fast-growing eye cancer which develops in the cells of the retina of babies and young children, usually under the age of six. The Childhood Eye Cancer Trust supports families affected by Rb, and aims to inform health professionals as well as the wider public about this disease. CHECT told us about their work and its challenges.
What is the Childhood Eye Cancer Trust?
The Childhood Eye Cancer Trust (CHECT) was set up to provide support for people affected by retinoblastoma (Rb). Some of our trustees and staff have experienced Rb first hand and know what a frightening and traumatic time it can be for the whole family when a child is diagnosed.
We work closely with the retinoblastoma teams at the Royal London Hospital and Birmingham Children’s Hospital. These are the two UK centres where Rb is diagnosed and treated.
Rb is rare and little known in the wider public, so we aim to provide accurate, up-to-date information and one-to-one support from the point of diagnosis and beyond, to help minimise the negative impact of the condition on the whole family.
Early diagnosis is vital to ensure the best chances of preserving a child’s vision, and to save their life. We believe everyone should know that children can get cancer in their eyes and what the signs are, so we work hard to raise awareness of Rb. We target health professionals with information about Rb, which can help them to make an early referral. CHECT also raises funds to support and fund clinical and scientific research projects specifically related to retinoblastoma.
What are the long-term effects of Retinoblastoma?
Rb has one of the best cure rates of all childhood cancers and there are a number of treatments available if detected early enough. In the UK about 98 percent of children survive Rb. However, around 70 percent of children with Rb in one eye (unilateral) will need to have their eye removed to save their life, and children with both eyes affected may have a visual impairment for life. Retinoblastoma is rare, with around 50 cases diagnosed in the UK each year. In about 45 percent of cases, the condition is heritable and a person who has had this form of Rb has a 50 percent chance of passing it on to their children.
What are your funding sources?
We have enthusiastic fundraising support from our membership—mainly families and individuals who have been affected by retinoblastoma themselves, and their amazing friends and relatives. We are also very lucky to have support from Vision Express, our main corporate sponsor. We are currently working hard to build our Friends of CHECT scheme to encourage regular donations as we receive no government funding at all.
What are any obstacles your organisation faces?
There are lots of challenges but we work hard to overcome them. We need to raise public awareness of Rb but because the condition is rare and not widely known, it can be difficult to grab people’s attention as the chances of it happening to their child are so slim. However, everyone has a role to play in recognising Rb—for example, some of those whose child was diagnosed with eye cancer were alerted to the signs by friends sharing pictures on social media or through reading an article in a magazine.
Raising awareness with health professionals can be even trickier—GPs have so many other considerations when examining a child that a rare condition like Rb is not often at the forefront of their mind. Getting the Rb message out to them can be very challenging as they are often bombarded with information on other, more common, conditions.
CHECT has a small (and very hard-working!) team of nine staff—half of us are part-time so resources are very limited. Bigger charities have a budget for marketing but we can only rely on the goodwill of others to help reach our audience.
As a small charity it is difficult to stand out in the crowded market of cancer charities and persuade businesses and trusts to support us. Often well-known charities are chosen for support but helping a small charity can make a massive difference and be hugely rewarding.
Getting secure funding for our vital support services is always a challenge so we have introduced the Friends of CHECT scheme, which we hope will enable us to plan and grow the work we do. You can find out more at www.chect.org.uk.
Do you hold fundraising events throughout the year?
Yes, we have contact with a number of organisations who specialise in fundraising events, provide places and promote the events to our supporters. There is more information about events on our website.
How can people get involved?
There are many ways people can help CHECT, from sharing our social media posts to having a car boot or cake sale, displaying a poster in the local nursery or nominating us as charity of the year at your workplace or club. You (or someone you know) could even skydive, bungee jump, undertake a bike ride challenge or run a marathon. Anything you can think of to help raise funds and awareness of eye cancer in children. We love new members (it’s free to join!) and hope that you would also become a Friend of CHECT—it costs from just £3 a month and means we can better plan our future. Whatever ideas you might have to get involved, we’d love to hear them too.
Learn more about the Childhood Eye Cancer Trust on their website.