We have launched a new initiative which we hope you will be able to join. It’s called ‘Friends of CHECT’.
Of course, if you are a member you are already a friend of the Childhood Eye Cancer Trust (CHECT) but this is something a little different. ‘Friends of CHECT’ is designed to formally recognise how much we value our members and supporters, whilst at the same time addressing the need for secure funding.
Over the last 25 years our funds have come mostly from individuals or through fundraising activities. CHECT receives no Government funding and has very little regular, predictable income. However, most of our costs are still regular and have to be maintained. This absence of guaranteed income makes it very difficult for us to respond to everything our members tell us is important and making the changes we would like is not always possible.
With a donation from as little as £3 per month you can join our ‘Friends of CHECT’ programme and this would help our GP awareness campaign reach the widest possible audience or set up a network of support for Rb teenagers. If a little more was given each month, we could develop solid future plans regarding research and support. You will then become a ‘Friend of CHECT’ and receive a lapel badge and a car sticker, which will raise awareness of Rb too. We will also send you regular updates on how your contribution is making a difference.
For more information and an application form click on the links below to download.
Come along to the CHECT members’ conference in September for the chance to hear updates on the latest research developments, attend presentations from the experts and understand more about the services that affect you. Of course, it is also a great opportunity to meet other families and individuals affected by Rb from around the UK.
14 September 2013
9.30am – 16.30pm
Resource for London (Nearest tube – Holloway Road)
Lunch and refreshments will be provided
We will be running two parallel programmes, one for adults and one for young people. There will also be joint sessions when you will have the opportunity to put questions to the panel of health professionals, expert in the field of Rb.
Unfortunately on this occasion we will not be able to provide any childcare so the conference will not be suitable for any children under the age of 11 years old. We will however be holding another family weekend in 2014 which everyone will be welcome to attend.
If the cost of travelling to the conference is a barrier to you attending please contact us to find out if you are eligible for a support grant to help with these expenses.
This programme is subject to change prior to the event. If anyone attending requires a final agenda to be sent in braille please let us know at the time of booking.
The conference is free to CHECT members: non-members or Healthcare Professionals will be charged £50 per person. As numbers are limited we ask that attendees pay a deposit of £10 per person to reserve a place. If you book a place and are unable to attend, the deposit can be refunded up to Wednesday 21st August. Deposits will be returned in cash at the conference and can be paid in the following ways:
* by cheque to the office at the address below
* or by bank transfer to account number: 00088630 sort code: 40-52-40 (please use your surname as a reference in the transaction so we know the money has come from you!)
We have an exciting new opportunity with the Childhood Eye Cancer Trust for keen supporters, like yourself.
For many years the Childhood Eye Cancer Trust has benefitted from the goodwill and endless energy of its members to help connect families, and raise both awareness and funds.
Without this valued involvement from our volunteers over the past 25 years CHECT may never have grown into the strong, respected organisation it is today.
We are now looking to establish a team of ambassadors to take this work further and help CHECT achieve its aims. Our ambassadors can take on a variety of different roles, depending on their interests and skills. They will be supported by staff throughout and training will be given where necessary.
We hope our CHECT ambassadors will help increase the awareness work we carry out around the UK and improve the support service for members as well as create a network of fundraisers who can share ideas and skills.
We value the regular support we have received in the past and would like to recognise these efforts by inviting supporters to be considered as an ambassador for CHECT.
We have identified three key roles for our ambassadors and you may be interested in one or more of these roles. Below are links to three ‘role descriptions’ which further details our hopes and expectations for each area. Please take five minutes to read through and hopefully you will find a role or roles to suit you.
If you would like to become an ambassador for CHECT simply indicate on the registration form, which you can download below, tell us what skills you have and how you would like to contribute and return it to us. This will give us a better idea about how you would like to be involved. Perhaps you have helped us in one area before but would like a new challenge now.
This is a voluntary position, however all reasonable travel expenses will be reimbursed. We will also provide you with an enamelled ‘CHECT ambassador’ lapel badge, a CHECT T-shirt and car sticker to help identify you when necessary.
If you would like to register your interest in becoming an ambassador for CHECT, download and complete the registration form below. Alternatively contact the office and we can post one out to you. Please let us know if you need help completing your form and we will be happy to do this for you.
We believe the role of a CHECT ambassador is extremely important and, as such, we hope you appreciate there are a list of requirements for the role, detailed below.
In the ambassador role you would be representing the trust and therefore we ask you to:
- Be a member of CHECT
- Promote CHECT wherever and whenever possible, provided that it is appropriate to the circumstances. This includes displaying the car sticker and wearing your CHECT T-shirt and badge;
- Abide by the policies of the trust that are in effect from time to time, including in relation to child protection, data protection and confidentiality;
- Provide references where the role requires;
- Use the good name and reputation of CHECT with respect and exercise a duty of care to protect that reputation;
- Participate in at least three ambassadorial activities in any year if possible;
- Read a CHECT ambassadorial agreement (to be sent at a later stage);
- Agree to your contact details being shared with other CHECT ambassadors to enable us to improve communications and organisation
We hope our ambassadors will be confident in their ability to represent the trust and help promote our causes and mission. It would be helpful, but not obligatory, for ambassadors to be willing to speak to press about their involvement with the trust should the opportunity arise.
We do hope you will take up this exciting opportunity and we look forward to hearing from you soon.
British crossover progressive rock band The Room have released their debut video of their song 'Screaming Through The Noise' - taken from their critically acclaimed debut album 'Open Fire' released at the turn of this year.
The video was filmed on location in April at the studios in Berkshire where the album was recorded.
Vocalist and Rb dad Martin Wilson explained the very moving and personal story behind the song. "My son Joshua was diagnosed with Rb when he was just over a year old. Following a three-year cycle of chemotherapy, laser therapy and radiation he enjoyed a period of remission. Unfortunately in 2003 the cancer returned to Joshua's right eye and surgeons had to remove it."
After a year in remission the tumour in Joshua's left eye regressed. Over the course of the next five years and some aggressive courses of treatment little could be done to save the eye. Birmingham Children's Hospital suggested a new treatment available in the USA. Joshua travelled to a hospital in Manhattan and went through seven cycles of intrarterial chemotherapy.
"It nearly worked" commented Wilson. "We had a few months' remission but it finally regressed in September 2009 and we were left with some very stark choices. We took the family to Orlando in October of that year and talked things through. In December surgeons removed the left eye leaving Joshua blind at the age of nine.
"We wrote the song 'Screaming Through The Noise' as a reflection on all that had happened over those very dark nine years. It tells the story of Joshua's brave fight against the hideous disease, set against a backdrop of the stretched emotions of the family setting. As Joshua's condition worsened and he became the focus of everyone's attention, his older sister felt marginalised and unable to explain her feelings.
"All these themes came together in a stunning piece of music," he said. "Joshua is now a mischievous funny and confident young man and an A1 student across the board. He has not let his disability get in the way of a very full life.
"We released 'Screaming Through The Noise' as a single in March in aid of CHECT and were determined to shoot a video to support the single and the album. We are absolutely thrilled with the outcome and hope to see it on Music TV channels really soon," commented keyboard player Steve Checkley. "It's one of those songs that really does raise the hairs on the back of your neck, especially when you know the story behind it" he said.
'Screaming Through The Noise' is taken from The Room's debut album 'Open Fire' which was released on Melodic Revolution Records to the acclaim of both fans and critics alike.
The band are making a number of live appearances this year including three festivals over the summer period. More information on dates, venues and tickets can be found on the band website (www.theroom.eu/chect ) along with the link to download the single in aid of CHECT
The video for Screaming Through The Noise is now available on YouTube on this link
The Room are Melodic Revolution Records recording artists
The London retinoblastoma service has now moved into the Children’s Eye Clinic in the new hospital at The Royal London in Whitechapel.
The Children’s Eye Clinic is now located on floor 6 of the new building, within the Children’s Hospital. If you have any questions about the move, contact the retinoblastoma team on 020 359 41419.
The new Royal London Hospital is located next to the current hospital in Whitechapel. The Children’s Eye Clinic can only be accessed by taking a lift from Lift Core 9 as shown on the map above. Hospital staff will be on hand to provide assistance. For full details, see the hospital website
Please note the contact number for the Rb team as published in the Spring edition of InFocus is now out of date and has been replaced with the number above.