Retinoblastoma patients or parents of children with retinoblastoma are invited to participate in a Sight Loss and Vision Final Prioritisation Workshop for Childhood-onset Eye Diseases on Monday 13 May at the Royal College of Ophthalmologists, London from 10-4pm.
The aim of this workshop is to produce a top 10 list of priorities for research into childhood-onset eye diseases from the perspective of patients and eye health professionals.
This will be used to inform the funding decisions of research funders.
There are two stages to the workshop - first you are invited to examine list of questions (see below) and submit your 10 preferred questions. These questions will be collated from everyone's responses and a final top 30 list of questions will be discussed at the workshop in May.
If you are interested in taking part it is preferable that you are able to take part in both stages.
Please note the deadline for the first stage has been extended until May 6th, contrary to what is noted on the document.
The first stage documents can be downloaded for printing here:
CHECT has signed up to take part in this year's 4km or 10km walk/run and summer camp in the beautiful Peak District - why don't you join us for a weekend to remember?
Join up to 250 runners and walkers who will be descending on Thornbridge Hall, near the beautiful town of Bakewell on Saturday, 6th July 2013. Entrants will all be raising money for a host of small charities, including CHECT.
You can chose to follow the shorter or longer route around the stunning Monsal Trail before crossing the finishing line on the lawn of Thornbridge Hall.
Whether you come for the day or stay the weekend, it’s a great summer event and an enjoyable way to fundraise while meeting other members of CHECT.
Camping is available for all supporters from Friday until Sunday, although spaces are limited. Toilets, showers and hot water are all provided, so you can camp in comfort.
CHECT will be hosting a stall, as well as camping in the grounds. The run/walk starts at midday on Saturday and there will be a Saturday evening barbecue for everyone to enjoy. For those camping Saturday night there is also a free garden party on the Sunday, courtesy of the FSI. Camping is FREE!
If you’re travelling from far away, or simply fancy a camping experience, then you are welcome to arrive on the grounds from Friday. Although Thornbridge Hall security staff will be around the grounds you will be left to your own devices. For any campers arriving on Friday you will be able to arrive from 1pm but no later than 9pm.
You will need to cater for yourself on the Friday evening and for breakfast on the Saturday and Sunday – or you could pop into the nearby picturesque town of Bakewell for a bite to eat.
On the Saturday evening the organisers of the event, the FSI, will prepare a barbecue with burgers, sausages and a selection of salads (vegetarian option available), which is available to all. There will be a small charge to eat, payable on the day, and you must register in advance if you want to partake so that they know how much food to order.
Campers staying until the Sunday, 7th July, must be packed up and off site by 9.30am. After which you can go and enjoy the many delights that the Garden Party has to offer – for free!
Please note that as camping spaces are limited campers are asked to share tents wherever possible. A few camper vans will be allowed on request but there will be no electricity supply for them to hook up to.
Please ensure that you read the Terms & Conditions.
4k route - The course follows the delightful Monsal Trail which is a public footpath accessible to all ages and abilities. It is relatively flat apart from a slight incline up a narrow path at the end. At the end participants will also be travelling through a small amount of woodland, which has a less even surface than the trail.
10k route - This is largely on the Monsal Trail, as above, however there is quite a steep, uneven decline which leads onto a public road for a short while. There is a steep incline back to the Monsal Trail but on an even surfaced road. Participants will be faced with the slight incline and woodland at the end as described above.
- That the finishing lawn is slightly beyond the 4k/10k finishing mark. Therefore the 4k/10k points will be clearly marked and you can stroll up to the finishing lawn as part of your cool down or alternatively you can race others right across the finishing line!
- That the trail will not be closed to the public so please ensure that due consideration is given to all other users of the trail and caution is given to bikes and horses approaching.
Those of you staying for the barbecue, this will be lit at 5.30pm so please make your way down to the campsite for then. Please remember that if you would like to order the barbecue you must register your interest in advance. This registration link is sent to the small charity once they register with the Challenge. Please contact the event co-ordinator to be sent the Camping/BBQ registration link.
All campers must have their campsite packed up and be off-site by 9.30am on Sunday so that Thornbridge Hall can prepare for the Garden Party. All campers are welcome to attend the Garden Party for free.
How to register
You can register directly with CHECT online by following this link or by downloading the pdfs below. Please note places are limited to 250 in total for the whole event and are allocated on a first come, first served basis, so ensure you register early!
There is a small registration fee of £10 per entrant and we politely request a minimum sponsorship of £100.
How to get there
Nearest motorway junction: M1 J29 – 16 miles. At junction 29 take the A617 exit to Chesterfield. At the roundabout take the exit for Chesterfield staying on the A617. At the next roundabout take the 2nd exit staying on the A617. At the next roundabout take the 1st exit signposted Bakewell A619. At the 3rd set of lights go across the roundabout staying on the A619 signposted Bakewell. At the next roundabout take the 1st exit signposted Bakewell A619. At the next roundabout take the 1st exit signposted Bakewell. Take the next major right turn signposted Bakewell. At the top of the hill take the next right turn signposted to Buxton. At the next roundabout take the 2nd exit, continue on this road as you take a left hand bend and come down the hill. Thornbridge Hall is on your right. Free parking is available at Thornbridge Hall: Thornbridge Hall, DE45 1NZ. Thornbridge Hall is the location of the finish point and a short walk to the start point, Thornbridge Outdoor Centre.
* Chesterfield Railway station is about 15 miles from Thornbridge Hall. Trains depart from London St Pancras and London Kings Cross to Chesterfield – this takes 2-3 hours, with no changes.
* Grindleford Railway station is about 6 miles from Thornbridge Hall. Trains depart from London St Pancras and London Kings Cross to Grindleford, with a change at Sheffield or Doncaster – this takes around 3 hours.
* Buxton Railway station is about 11 miles from Thornbridge Hall. Trains depart from London Euston, with a change at Stockport – this takes around 4 hours.
Please check with National Rail for your best route.
Celebrity chef Gordon Ramsay is the latest star to support our wristband gallery of fame! We set up the gallery so we can show you who is supporting our awareness campaign. Click on the link below to see how many familiar faces you can spot and to find out how you can help raise awareness of Rb by selling wristbands on to your family and friends. What are you waiting for? Come and mingle with the stars...
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.
World Retinoblastoma Awareness Week 2013 runs from May 12-18.
As part of World Rb Awareness Week CHECT has drawn up a new protocol for opticians to ensure parents are never sent away without the correct information about who to seek help from. We are pleased to announce that protocol, approved by our medical advisor Mr Ashwin Reddy, Consultant Paediatric Ophthalmologist and Retinoblastoma Surgeon at Barts Health NHS Trust, has now been adopted by Vision Express. We are hoping that other opticians will also follow suit. Here is the protocol we are asking opticians to adopt. Please let your local optician know about the work we are doing and show them our protocol if you can.
CHECT is targeting healthcare professionals during this year's Rb Awareness Week and we have developed a tool kit to help educate them in the signs of Rb, the genetics and effects of treatment later in life.
The tool kit includes:
- Introductory letter to the practice manager
- Information leaflet for professionals
- Laminated red reflex poster (see right) with instructions on how to check children's eyes for signs of Rb.
- Squint challenge leaflet
- I Spy awareness poster for waiting room displays.
How you can help
We need your help to get as many tool kits to healthcare professionals across the country. We are challenging our members to hand out as many packs as possible during Rb Awareness Week. So we can track the success of the campaign and how many people we have reached, we will ask you to let us know the names and postcodes of any clinics/surgeries you give the packs to.
We need you to help us target baby clinics, GP surgeries, opticians, health visitors and practice nurses to make sure they are fully informed about the signs of Rb and take parents' concerns seriously.
We have produced all the materials for you, including a covering letter - we just need you to identify which surgery or healthcare professional you will be approaching and hand them the pack. We are aiming to get as many packs out to you as possible leading up to Rb week so let us know now if you can help out.
We really need your help with this - we cannot do it alone.
Telling your story to the media
One of the most effective ways of raising awareness is through the media - parents have told us they knew to take action when they saw a sign in their child's eye because of something they had read or heard about in the media.