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 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 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. The appeal reveals to the public how CHECT support workers help give families the skills and confidence needed to cope.

Harry Harry was diagnosed with Rb at the unusually older age of eight and had to have his left eye removed. As well as having dealt with a lengthy cancer battle - Harry found himself struggling, and needed counselling. The film explores how our teenage events and Teen Focus Council gives teenagers, like Harry, an opportunity to share their experiences, boost their self-esteem and have fun.

Rob Born in the 70’s, Rob was diagnosed with Rb when he was 14 months old and had his left eye removed. Having the heritable form of the disease, Rob’s battle didn’t end there. Both of Rob’s sons inherited the gene mutation. However - thanks to early screening and diagnosis, combined with advancements in clinical treatments - doctors were also able to prevent both Josh and Jamie from having an eye removed. 6 Childhood Eye Cancer Trust Spring 2019 Issue 87

TWO SETS OF TWINS, TWO FAMILIES, TWO RB STORIES

Whilst having twins is Worried, Alison and her someone else’s child you rare, an Rb diagnosis is husband Jerome took Indiana hear about – never yours.” even rarer. Two mothers to her GP and a referral was then made to Moorfields Indiana later began recall their similar Eye Hospital in London. chemotherapy treatment stories of how just one at Great Ormond Street of their twin children With the results playing on her Hospital. Much to everyone’s mind, Alison then called the relief, Indiana’s cancer was diagnosed with Rb. hospital to make sure they had has responded well to Identical twin Indiana was received the referral – they chemotherapy, her tumour diagnosed with unilateral hadn’t. Moorfields advised that has shrunk and her check- Rb when she was just Indiana could be seen in their ups are getting further under four months old. children’s A&E department and further apart. straight away. It was there that After a visit to a health visitor, they did an ultrasound and Alison added: “We’re now everything was believed to be confirmed Alison and husband spending periods of time fine with the twin girls. However, Jerome’s dreaded suspicions covering her good eye with when Indiana was sitting on – Indiana had cancer. an eye patch to try and the sofa one day, mum Alison improve the vision in her noticed the dim light reflecting Alison said: “On top of the other eye – however she’s oddly in her little girl’s eye. stress of being a new mother now sneakily discovered and learning to cope with twins how to remove it! Indiana is Alison, from South Croydon – to hear the news that one of certainly the rowdier of the said: “Her eye looked like a cat’s them has cancer, is absolutely two - I can imagine she’ll be eye or a marble – but only in terrifying. You never think it will the one getting her sister into a certain light. I first noticed it happen to you – it’s always trouble when they’re older!” when she was sitting near the TV, but we later went shopping in H&M and I saw it again. I thought it was odd so got it checked out by a GP. Looking back, I also remembered seeing something online about a ‘white eye’ being linked to cancer.” Alison added: “I feel terrible now – but before she was We had an incredible media response to Alison’s story. diagnosed, my husband and I We’re especially grateful to ITV London who featured were joking that Indiana looked the Lawler family on the evening news back in March. a bit cross-eyed, which we did You can find this on our YouTube channel at: check with the health visitor and www.youtube.com/c/CHECTUK. were reassured all was fine.” Spring 2019 Issue 87 Childhood Eye Cancer Trust 7

In a similar story, mother and Midland Eye Centre for of non-identical twins, further tests the following day.” Parveen also shares It was there that the specialist her experience. confirmed that Husayn had no vision at all in his right eye. “We also had to keep an extra Parveen’s son Husayn was eye on his twin brother Hasan diagnosed at the age of eight Parveen said: “We were obviously shocked – we had as he was always there with a months after her and husband helping hand to peel it off too!“ Rizwan spotted an unusual no reason to suspect that he glow in their son’s eye. had any problems with his The family took on-and-off vision – he seemed like a normal shifts to watch Husayn to Parveen from Birmingham said: baby, playing and doing normal ensure his patch was being “At first I thought nothing of it. baby things. Little did we know kept on for the full four hours I thought it was a combination that he’d already adapted to per day. Eventually, Husayn of the sun shining in through life with monocular vision.” began to tolerate the patch. the window and the glow from the TV. It was only when Husayn was seen at Birmingham Parveen said: “I now shout Rizwan also mentioned it a Children’s Hospital two days ‘patch finished!’ at the end couple of days later that we later for further tests. It was of the session and only knew something could be there that they confirmed then does he peel it off. I’m wrong. He immediately started Husayn’s bilateral Rb diagnosis, absolutely over the moon, he to Google the symptoms.” leaving him with only 10% is my strong little fighter.” vision in his right eye. “To be honest, even at that point, Parveen’s resilience is paying we really thought it wouldn’t Thankfully, there was a chance off and, with a combination of turn out to be anything serious. that both of Husayn’s eyes could patching and a good response to However, for peace of mind, still be saved. His left eye had chemo, she says that Husayn’s we thought we would mention laser treatment straight away. sight in his poorly eye has vastly it at the GP appointment However, an intensive course of improved – amazingly by 70% we had coming up.” chemo of was required to shrink a few months ago and he now the tumours in his right eye. has equal vision in both eyes. “I expected the doctor to say that I was another Whilst going through chemo, In a message to parents, worried over-bearing mother, Husayn’s weaker eye was being Parveen added: panicking over nothing”. strengthened through the use of a patch – which proved to “Never give up. Perseverance However after studying be a difficult process. Due to and staying strong is the key Husayn’s eyes with the red having only 10% vision in his to success as hard work and reflex test, the GP stated that right eye, Husayn could only see dedication does pay off. It’s the she needed to make an urgent large colourful toys, the TV and worst time for any parent, but referral, knowing that the people from very close range. stick at it. You need to be positive symptoms could indicate Rb. and keep going, even though Parveen explained: “As well as it’s tough – especially when you “I couldn’t wait, not knowing if dealing with the side effects of can see that your child is visibly the referral would come through chemo, trying to get him to keep upset at having to wear a patch. the following day or the following the patch on was draining both week. So the GP wrote us a letter physically and emotionally. We “If it means you can improve to take with us to the Emergency were consistently having to keep their vision, even slightly, as a Department at the Birmingham him occupied as a distraction.” result - it’s all worth it in the end.” 8 Childhood Eye Cancer Trust Spring 2019 Issue 87 HAVING ONE EYE MAKES ME WHO I AM Kate Foster was diagnosed with Rb as a baby and had her eye removed As I got older that did change, kids can be cruel, before her first birthday. Now, 28 so can teenagers and unfortunately so can adults. years later, she looks back on her As a teenager I felt that having one eye made me journey to achieve her dream of different to everyone else. How would I ever get a becoming a nurse, so she can support boyfriend? Would anyone like me? Or would they families just like hers… be too worried about what other people would say if they did go out with me? I was 11 months old when I was diagnosed with retinoblastoma in my left eye, after many visits I left school at 16, and I began to build my life to the GP. The tumour was 0.8mm from my with the support of all of my family. optic nerve and because it was so big I lost my All I wanted to be was a nurse – I just wanted to eye and needed chemotherapy afterwards. care for people and make a difference to their A few days after my surgery I returned home lives. I wanted to be the nurse who everyone with no eye – my mam and dad were devastated loved to have around, the nurse who always did but my older brother reassured them that I was their best. I wanted to support patients’ families still beautiful. I remind him regularly of this now! through those heartbreaking and hard times, just like my family had faced. After growing up and having numerous artificial eyes over the years I now have one I would say Realising a dream was pretty perfect. I have never let the fact that I My life experiences gave me the determination have one eye define me, however it has been an and motivation to make my dream a reality. influence in making me the person I am today. Thanks to the continuous support of my family, friends and partner who I wouldn’t change for Growing up with an artificial eye the world, I succeeded in my dream and became When I was little, my biggest worry was taking a nurse nearly seven years ago. it out and showing my friends how cool it was. I stood up at nursery and told everyone why I had My mam and dad are my rock, they picked me a different eye following questions from other up when life got tough, wrapped their arms kids in the class. I was never fazed. around me and reassured me it would be okay, they taught me how to be a better person. They forever told me how beautiful was, until I started to believe them. They supported me through the good, bad and ugly times and the love I have for them is unconditional. My brother is so brave. He stood up for me and supported me through my treatment and copious amounts of hospital visits, he never moaned about anything.

I wanted to support patients’ families throu gh those heartbreaking and hard times, just like my family had faced. Falling in love My eye is an I met my partner Lee eight years ago, I icebreaker remember telling him about my eye not long Cambridge student after we met and I was so nervous. He was not Dominic Bielby has fazed in the slightest, my eye didn’t have any not let his artificial eye influence in his decision for us to get together. hold him back. Instead, He continues to support me every day, in every he found that embracing his decision I make. He is my best friend. He gave uniqueness has turned out to be me the confidence to believe in myself, he a strength – especially when making new continues to believe in my ability and pushes friends. me to always reach and succeed in my dreams. Diagnosed with Rb at the age of two, the law I don’t know what I would do without my best student had his left eye removed and has since friends - both Nicola and Stacey have continued used an artificial eye. He said: to believe in me, support me and pick me up when the hard times come around. “One of the main fears that comes with having an artificial eye is social interaction, that feeling I am now 28, I own a house, drive a car, have made that somehow you won’t fit in because your eye plenty of mistakes but learnt from them, have the contact is slightly off or your face is not best family and friends, the most amazing partner quite symmetrical. and I’m a nurse studying for a second degree in public health. I can honestly say having one eye However, in my experience, having an artificial hasn’t stopped me doing anything. eye has never been an obstacle to making friends and being social – in fact I’ve found People still ask about my eye sometimes, and it advantageous more than anything. I can when I get the occasional cruel comment it does guarantee that nothing spices up the blandness still hurt, but doesn’t that say more about them? of yet another, ‘What’s your name, where are And whether it be the fact I had a false eye or a you from and give us an interesting fact about huge spot they would always find something. yourself!” than casually dropping in the fact that Don’t let Rb define who you are, dream big, there you have an artificial eye. As an icebreaker, is nothing in this world that can’t be achieved. it’s unmatched.” Always remember that everyone is fighting a Celebrating his uniqueness one step battle we might not know anything about. further – and to mark the end of We all have our insecurities, but having one eye his freshman year - Dominic has definitely makes me who I am, and honestly I recently received an artificial eye would not change a thing about my life, because painted to reflect his Corpus Christi I wouldn’t be me. College crest. I wouldn’t have the family I do, the friends I do, Dominic set up a Go Fund or my partner. I look at them every day and feel Me page to raise money very lucky and grateful, and I thank my lucky for the prosthetic eye – stars I have them in my life. which he has personally matched and donated to CHECT. He’s promised donors that he would wear it to college events, tours I wanted to support patients’ families throu gh those heartbreaking and maybe even and hard times, just like my family had faced. interviews too! 10 Childhood Eye Cancer Trust Spring 2019 Issue 87

GIVING VISUALLY IMPAIRED CHILDREN THE BEST START IN LIFE Harry was eight weeks old A visual impairment teacher when he was diagnosed with visited the family once a week However, all bilateral Rb which led him and, at the age of two, Harry this equipment is not cheap - to become severely visually also received funding for thankfully Harry’s school was impaired. Now eight years support during pre-school. able to secure the funding. old, Harry is enjoying life at As Harry was already great at mainstream school thanks interacting with other children Lisa added: “Harry’s school to modern equipment and and was coping really well were always supportive, even access to support funding. at pre-school, the decision helping to source, finish and was made to send Harry to a send off relevant support Treated with chemotherapy mainstream primary school. and laser at Birmingham forms. They also reassured us Children’s Hospital, Harry is “It was suggested that Harry that if external funding didn’t currently having check-ups could go to a specialist school come through, that the school every four months. Mum Lisa for the blind – but I wanted would pick up the bill.” recalls the excellent support to try mainstream. We got in Despite needing extra support they received and the advice touch with the school and with compared to other pupils at they were given in order to support from the hospital, mainstream school, Harry prepare Harry for his life ahead. put a case forward for Harry’s is flourishing and is now on equipment.” Lisa, from Lancaster, said: his school’s gifted register. “Birmingham Children’s The one-to-one support that Lisa said: “Harry does great at Hospital set everything in Harry had received early on school - it’s possibly the way he motion for me. We were lucky in life ensured that he was manages his mind. The way he in that sense, the team were already off to a good start. The remembers information, being brilliant and they reached out application for funding was visually impaired, he’s learnt to me first. When you have a successful and Harry was able to remember from verbal very young child on chemo who to access the equipment which communication very easily.” also can’t see very well – school could help him the most in his It’s important that parents is the last thing on your mind.” transition into school. with visually impaired children Since starting school, Harry has seek support and sort out received a specialist Prodigi arrangements for their child’s electric magnifier, a laptop education as soon as possible. “When you have a and an electronic brailler. The All you can think about is very young child Prodigi equipment shows a them getting better as soon as on chemo who high resolution camera image possible. Then you suddenly also can’t see of the teacher and board. This realise – school.” very well – school way, Harry doesn’t always need to sit at the front of the class, Lisa added: “I hear from some is the last thing parents that trying to apply for on your mind.” it’s also portable so he can take it with him. support is like banging your Spring 2019 Issue 87 Childhood Eye Cancer Trust 11

head against a brick wall that to get advice from parents to eight months after a letter sometimes. There’s a who have gone or are going is sent is often when you can Facebook Group for through the same thing as you.” expect a reply. Get the school parents of visually impaired involved as soon as possible Rb children. It’s definitely “Start asking questions about too to ensure they get the best worth getting involved with school now. Hearing back can start in life.” be a long-winded process, six

For more information about early years and visual impairment, please visit our resources page on the CHECT website at www.chect.org.uk/resources and download the leaflet. Your support worker can also signpost you to a range of organisations supporting children with visual impairments and their families.

CHECT TEEN FOCUS COUNCIL Teen CHECT Member crew for the CHECT Lifeline The final item on the agenda Christopher Payne recalls Appeal. This was a new and was a workshop discussing his experience of attending rather daunting experience for isues which had arisen as a the third ever CHECT Teen me. We were asked a number result of our Rb, as well as Focus Council (TFC) back of questions regarding both advice on how to sort them in February. the TFC and CHECT. out. I think we would all agree that this was extremely useful, With a large turnout, we Hannah and Kate, were being able to hear about others’ assembled at London’s also interviewed. As we sat experiences, and lending Minerva House. Harry kicked waiting for them to finish, advice to them as well as vice things off with a quick welcome the conversation turned to versa. I believe we all found this and introduction as well as an university destinations whilst helpful, leaving the meeting Instagram story on the new Theo introduced Katie, Isha, armed with strategies on how CHECT Teen Focus Council Will and me to the far away to address the issues we had Instagram channel. The first (and completely made up) discussed and brought up. item on the agenda, the land of ‘Limberwisk’. After Kate minutes from the last meeting and Hannah had returned, we A big thank you to all who began to be discussed. attempted to walk back into attended and to Patrick and With BBC film crew also in the boardroom as naturally as Lesley - without them, this attendance, we all tried to possible, in the full knowledge meetup would not have been remain natural and calm. We that the BBC cameras were possible. We all thoroughly covered items such as creating filming us. It took a total of four enjoyed it and are looking a new TFC logo; social media times for us all to forward to the next meeting in activity and use of Messenger enter successfully! Birmingham, as well as seeing chat; dates and venues of our faces on TV! future meetings; the members’ survey; and the TFC website. If you or your child would like to be involved with the CHECT TFC, please contact Lesley Geen CHECT Support During lunch, Harry, Beth and Worker on 020 7377 5578 or at [email protected] I were interviewed by the BBC 12 Childhood Eye Cancer Trust Spring 2019 Issue 87

A YEAR IN NUMBERS CHECT MEMBERS’ SURVEY RESULTS SUMMARY 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: 100% 50% 0% 4% 75% redness or white glow 85% Support worker on swelling (14% spotted ward / outpatients in a photo) during clinics

83% Support for parents 14% of children with Rb change in iris colour 73% Email support 4% 36% other squint 70% Support for teenagers who have had Rb 69% Support for Referrals made by adults who have had Rb medical 49% professionals non-urgent referral 68% Support for when presented siblings of with Rb children with Rb symptoms: 51% 67% Telephone urgent support referral

63% Facebook support groups

59% Support grant

59% Support via social media messenger 57% Support for grandparents of children with Rb MEMBERS’ DAY

Our latest members’ day took place at the Brooklands Museum in Weybridge, Surrey - the birthplace of British motorsport, aviation and home of Concorde!

Members’ days are a great way to meet other families who are or have been affected by Rb and to nominate your child for a CHECT Champion Award. Sadly, we didn’t have enough room here for all the photos, but you can see the rest on our Facebook page. 14 Childhood Eye Cancer Trust Spring 2019 Issue 87

A MARATHON FEAT FOR CHECT Congratulations to all our fantastc CHECT London Marathon runners - not only did they all manage to finish the race, they collectively raised well in excess of £30,000 for CHECT. They are:

SARAH BALDOCK SALLY BANYARD NICK BARNES ROB CARMICHAEL

ALEX HACKLAND PAUL HOLT DARREN KIRKHAM TOM RICHARDSON

REMEMBERING GEMMA

Many of you will remember reading about Gemma Edgar, who ran the London Marathon in 2018, whilst being treated with chemotherapy for an incurable brain tumour. BEN REVILL SAM SAMPSON The Marathon was on her ‘bucket list’ and we were delighted and privileged that she was able to run this in support of CHECT after her youngest son, Noah, was diagnosed with retinoblastoma. Very sadly Gemma passed away, peacefully, with her family by her side, in December last year.

Gemma was, quite simply, an amazing woman who inspired many with her determination to love and live each moment that she had. We remember Gemma, her beautiful smile and ability to always think of others, with awe and gratitude. We send our sincere condolences to her husband Rob, sons Dylan and Noah as well as to her parents Andy and Barb and brother Lee. - Lesley Spring 2019 Issue 87 Childhood Eye Cancer Trust 15

CRAZY GLASSES DAY

A Crazy Glasses Day can be held any day during the year. All you need to do is wear a pair of ‘crazy glasses’ for a day and donate £2. You can do this at home with children, or you could get your school or office involved.

If you’d like to buy a pair of glasses, you’ll probably find cheap novelty ones in your local pound shop or online. However, we’ve put together some free resources so you can download, print and design your own pair at home. If you’d like to join in the fun, you can find out We can also provide collecting tins, balloons more at www.chect.org.uk/crazyglasses. and CHECT leaflets. Since 2018 we have seen schools, workplaces and nurseries hold a Crazy If you need any more information please contact Glasses Day to raise awareness and funds. It’s a Diane Emery, our Fundraising Manager, on really fun and simple way to support us. 020 7377 5578 or [email protected].

CHARITY OF THE YEAR THANK YOU!

We’re delighted to announce that global sports and We are very grateful to entertainment tech company, Deltatre and Massive, have those supporters who have chosen CHECT as their 2019 Charity of the Year. We’re very remembered our charity in excited to be working with them this year . their will, and also to those who arrange donations in memory of A huge thank you to Birmingham Optical for supporting us a loved one – this is a wonderful as their Charity of the Year for the third year in a row. The tribute and we appreciate the organisation has raised over £20,000 for CHECT through thoughts of those who support a variety of events including dog walks, half marathons, CHECT even at such a difficult marathons, a darts match and iPad sales. This year they time. Our condolences and plan to raise money by taking part in the Birmingham 10k, grateful thanks are extended to Tough Mudder and a skydive. Outside of fundraising, the the families and friends of: organisation raise valuable awareness for us among their clients and their staff also volunteer at CHECT events. Elizabeth Plant Edwin Branch Marina May Wisdom Hilda Beatrice Ledbrook COULD CHECT BE YOUR WORKPLACE’S Harry Bradshaw CHARITY OF THE YEAR? Linda McCauley Phyllis Maud Hindmarsh If your company would like to support us in any way, we’d Sybil Hallam really love to hear from you. Please email Diane Emery, our Harold McCallum Fundraising Manager, at [email protected] or Margaret Potter call 020 7377 5578. WHAT’S ON... Join fellow CHECT supporters in raising funds while taking on a personal challenge – and having fun!

RunThrough Regent’s Park 13th July 2019 Choose 5km or 10km runs past London Zoo and the grounds of Winfield House, the second largest private garden in central London. The flat course offers a great opportunity for a chip timed personal best. If you don’t want to run, why not join us to cheer along our team? And afterwards you can walk through the elegant flowerbeds in the Avenue Gardens, see more than 12,000 roses in Queen Mary’s Gardens, or hire a rowing boat and join the ducks on the boating lake. Minimum sponsorship £200. To find out more about Pedal 4 Cancer 8th September 2019 any of these events, This beautiful route takes you from London to Cambridge on rural roads through the Hertfordshire and Essex countryside before being cheered or others that we have onto the finish line - as well as receiving a well deserved medal and glass planned for the year of something bubbly! Minimum sponsorship £175. ahead please call Diane Emery on 020 7377 5578 Great Birmingham Run 13th October 2019 or email her at Now established as the second biggest half marathon in the UK, [email protected] Birmingham comes alive with thousands of runners pounding the streets, encouraged by on-course bands, entertainment and, of course, cheering crowds. Minimum sponsorship £300.

WE NEED TITLE FIRST NAME YOUR HELP SURNAME We’ve been helping families affected by BILLING ADDRESS TEL Rb for over 30 years EMAIL but we don’t receive any government POSTCODE funding so we rely Please accept my donation of: on public donations to pay for our work. £5 £10 £20 £50 Other (please specify) Please use this form I enclose a cheque made payable to the Childhood Eye Cancer Trust to donate to CHECT. Please Visa Alternatively you debit my: Maestro MasterCard Visa Credit can donate online Debit at chect.org.uk/ donate. Thank you. CARD NUMBER: SECURITY CODE (last three digits on the signature strip of your card) Return to: Childhood Eye Cancer Trust, Valid From: / Expiry / Issue number Whitechapel Road, (if applicable) (Maestro only): London, E1 1FR. SIGNED DATE / /

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