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BBC LIFELINE APPEAL a Behind the Scenes Insight Into Our BBC Lifeline Appeal Featuring Eastenders Star Shane Richie and Our CHECT Families

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BBC LIFELINE APPEAL a Behind the Scenes Insight Into Our BBC Lifeline Appeal Featuring Eastenders Star Shane Richie and Our CHECT Families Spring 2019 Issue 87 Childhood Eye Cancer Trust 1 BBC LIFELINE APPEAL A behind the scenes insight into our BBC Lifeline Appeal featuring EastEnders star Shane Richie and our CHECT families. CHECT MEMBERS’ SURVEY RESULTS SUMMARY Read about it on page 5. PATHWAY TO DIAGNOSIS RESULTS 229 CHECT members completed the Reported information for 28 out of 40 children who survey in February 2019. were diagnosed with Rb in the UK in 2018. The importance of our services Reported first symptoms of Rb in 2018: percentage of members who said each - multiple symptoms can be reported per case. of these areas were important: 4% 75% 100% 50% 0% redness or white glow swelling (14% spotted 85% Support worker on in a photo) ward / outpatients during clinics 83% Support for parents 14% of children with Rb change in iris colour 73% Email 4% 36% support TWINS TIMES TWO PROUDLY UNIQUE A YEARother IN NUMBERSsquint 70% Support for TWO SETS OF TWINS, TWO HOW ONE STUDENT EMBRACED MEMBERS SURVEY RESULTS AND teenagers who have had Rb FAMILIES, TWO RB STORIES. HIS ARTIFICIAL EYE. THEReferrals LATEST made by RB INFORMATION. 49% medical 69% Support for PAGE 6 PAGE 9 PAGEprofessionals 12 non-urgent adults who referral when presented have had Rb with Rb 68% Support for symptoms: 51% siblings of urgent children with Rb referral 67% Telephone support 96% satisfied 96% satisfied 63% Facebook support groups Satisfaction Satisfaction 59% Support with our with our grant communication’s services and accessibility support 59% Support via social media messenger 57% Support for grandparents of 4% dissatisfied 4% dissatisfied children with Rb 2 Childhood Eye Cancer Trust Spring 2019 Issue 87 CONTACT US CHECT office hours are Monday to Friday, 9am-5pm. CHECT, Royal London WELCOME Hospital, Whitechapel Road, London, E1 1FR. /CHECTUK New @CHECTUK postcode! chect_uk Welcome. our teenagers getting together T: 020 7377 5578 for another meeting of their E: [email protected] We’ve been incredibly busy over W: www.chect.org.uk Teen Council; and a fantastic the last few months and it’s been response from Waitrose who a challenge to fit everything into OUR TEAM have repeatedly nominated this jam-packed latest edition of PATRICK TONKS us in their Community Matters Chief Executive InFocus. scheme. E: [email protected] This March saw the airing of our 13th-19th May 2019 marked Rb JULIA MORRIS BBC Lifeline Appeal presented by Support Worker Awareness Week and I know Mon, Wed & Fri. EastEnders star Shane Richie. We’d that some of you have hosted a T: 0121 708 0583 like to thank Shane, the families E: [email protected] Crazy Glasses Day to fundraise involved and the BBC for generously for CHECT. This is only the LESLEY GEEN giving their time to help us with this Support Worker second year since we launched Monday to Friday. special film. We’d also like to give the campaign and, thanks to T: 020 7377 5578 a huge thank you to all who have E: [email protected] the engagement of so many of watched, donated and helped us our members, we hope that it PETRA MAXWELL spread the word. Information & Research Manager continues to grow. E: [email protected] Also, at the end of March, we issued I’d like to give a particular thank KAT HIGGS our latest call for new research Communications Manager you to everyone who took the papers and we aim to select the E: [email protected] time to complete our CHECT next project(s) in the autumn. DIANE EMERY members’ survey – all 292 of you. Fundraising Manager Recent months have seen our Your feedback will really help E: [email protected] members get together at our us to enhance and improve our LIZZIE SMALLDON regional members’ day in Surrey; support for those affected by Trusts & Foundations Fundraising Manager one family share their moving Rb and assist us in determining E: lizzie.smalldon @chect.org.uk awareness-raising story on where we should be focusing our FRANCESCA WILFORD-DAVIS ITV Evening News; our resources in the future. Office & Finance Manager fundraisers tackle the E: [email protected] Having been with CHECT for amazing London almost four years now, I remain BETH LARDNER Marathon; so Admin Assistant inspired and humbled by the many of you E: [email protected] determination, generosity and generously taking the achievements I see across on challenges or The opinions expressed in this so many families and individuals newsletter are those of the individual raising money authors and are not necessarily affected by Rb. Thank you. by holding social those of CHECT or the editor. events; © Childhood Eye Cancer Trust (formerly The Retinoblastoma Society) 2004. Registered Charity No. 327493. Design volunteered by mccoole-creative.co.uk Patrick Tonks Chief Executive Spring 2019 Issue 87 Childhood Eye Cancer Trust 3 New postcode! NEWS ARTIFICIAL EYE REPORT CHECT CHAMPIONS Following the Spring/Summer 2018 InFocus article As ever, our CHECT Champions have on the research project ‘Understanding and inspired us with their bravery coping overcoming barriers to living with an artificial eye’, with the impact of cancer has had the full final report by Deanna Gibbs, Tara Shea and on them and their families. Here Laura Reynolds is now available to download from are the latest CHECT Champions to www.chect.org.uk/research. receive their certificates at the CHECT members’ day back in March: LATEST GENOME RESEARCH • Balfour Baxandall The latest CHECT-funded research project is • Elodie Baxandall underway. Lead by Professor Ohnuma at the UCL • Ethan Burn Institute of Ophthalmology, the project will use whole • Ayana Catanitiou genome sequencing (the process of determining • Rosie Davison the complete DNA sequence) to study the genetic changes that occur in retinoblastoma. It hopes to • Olivia Lodge detect which genetic variants respond best to which • Ailsa McLeary treatments, in order to help to inform treatment • Drew Murray options and improve outcomes, as well as potentially helping in the diagnosis of Rb. For more information visit www.chect.org.uk/research. CONTENTS HAVE YOUR SAY Page 3-5 News Do you enjoy receiving your copy of InFocus? Page 6-9 Real Lives Is there anything in particular you’d like to read Page 10 Advice about? Do you have any ideas for how we can Page 11 Teen Council improve it? If so, we’d really love to hear from you - Page 12 Year in Numbers please contact [email protected]. Page 13 Surrey Members Day Page 14 -15 Fundraising Thanks for your support! 4 Childhood Eye Cancer Trust Spring 2019 Issue 87 YOUR COPY OF INFOCUS Are any other formats of InFocus available? Yes, we offer InFocus in the following formats: • Large print (A3) • Braille • Electronic versions – Image: Ted.com PDF and HTML If you would like to receive InFocus in a new format, please let us know by calling us on “HOW YOUR 020 7377 5578 or emailing IMPAIRMENTS CAN BE [email protected]. AN ADVANTAGE” All of our members are entitled to receive After his son Fintan lost his sight a postal version of InFocus. However, if you to Rb, design technologist James would prefer to receive an electronic version Morley-Smith observed how Fintan in future, just let us know at adapted to interact with the world around him, such as learning to play [email protected] or on 020 7377 5578. piano, starting with the black keys first. This tactic inspired James to approach his design from a new angle by considering impediments first. His moving and inspirational TED Talk can be watched online at: www.chect.org.uk/blog. NEW FACES chect.org.uk/team | chect.org.uk/trustees We’re delighted to welcome three new faces to the team... Kat Higgs Francesca Wilford-Davis ...and we’d also like to welcome Communications Manager Office and Finance Manager our new Trustee and Treasurer Gemma Boggs. Spring 2019 Issue 87 Childhood Eye Cancer Trust 5 BBC LIFELINE APPEAL We were incredibly proud This short programme gave an emotional insight into of the support we received the journeys of some of our families affected by Rb, in creating our BBC Lifeline the work that we do and why supporting Childhood Eye Cancer Trust is incredibly important. Appeal. Lifeline is a monthly nine minute film broadcast We’d like to thank Shane Richie for volunteering his time to do on BBC One highlighting a fantastic job of presenting our appeal, as well as the families, teenagers and little ones who all took part and everyone the work of a charity and who has watched and supported us so far to help us to raise appealing for donations over £15,000. If you missed it, don’t worry, it’s now available to support its activities. to watch on YouTube: www.youtube.com/c/chect_uk MEET THE STARS: The Corcoran and Branch families Although not featured as case studies in the film, the Corcoran family visited London for the day to take part in a photoshoot as part of the appeal - featured on the cover of this edition of InFocus! We’re also very grateful to Amber and Pippa Branch who helped us film scenes in The Royal London Hospital. Alice It was when Alice put an eye patch on over her right eye, her mum Emily realised that she could no longer see. Alice was then diagnosed with Rb at the age of two. After chemotherapy, things were starting to look good. However, Alice relapsed and the difficult decision was made to remove her eye.
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