annual review 2014 - cclg cclg...in this important role. dr james nicholson, consultant paediatric...

Annual Review 2014www.cclg.org.ukRegistered charity number 286669 Joel, aged 2

2014 was something of a transitional year. At the membership’s summer meeting, Dr Mark Gaze stepped down at the end of his five years as Chairman of the Executive, and we thank him for all his work in this important role. Dr James Nicholson, Consultant Paediatric Oncologist in Cambridge, succeeds Mark as Chairman.

A lot went on behind the scenes during the year, with preparatory work and consultation with the membership and with families on various projects to support greater fundraising and an improved profile for CCLG. You can see one result in this Annual Review: our new branding, logo and strapline. These have been carefully designed as a key element supporting our strategy to raise awareness of childhood cancer and our work. Our new strapline, ‘working together to beat childhood cancer’, really sums up what CCLG does, and our annual review is testament to that. You can see how our members, supporters, fundraisers, staff team and colleagues across the UK are working together, with one goal - beating childhood cancer. We are pleased to have been able to support a number of research projects during the year (see pages 4-5), and, with the support of our fundraisers, this is an area we are planning to develop further during 2015. We were also delighted that Cancer Research UK continue to support the CCLG Tissue Bank, with a new three-year grant beginning in April 2015.

Our professional membership - doctors, nurses, pharmacists, clinical trials staff and many more who work in this field - continues to drive up standards of care and improve treatment. We’ve continued to publish treatment guidelines and recommendations, and advised a number of other bodies involved with childhood cancer during the year, including NHS England and NICE. In September, we ensured that the UK and Ireland were represented at a special meeting bringing together childhood cancer organisations from across Europe, and committed to supporting a European-wide children’s cancer plan, to improve care and access to treatment across the continent. CCLG’s publications for patients, parents and families are one of our core activities (pages 6-7). As well as a big increase in the number of publications provided during the year, we were thrilled that the high standards of our production processes and end products were recognised once again, with the award of the Information Standard mark for a further three years. We also added another trophy to the cabinet, with ‘Aftercure’ being highly commended at the British Medical Association Awards. Our new fundraising strategy is paying off, resulting in a substantial increase in income for CCLG during 2014. Growing our income means we are able to do more of our vital work, and we are extremely grateful for the support of our fundraisers. You can read some of their stories on pages 10-14.

Another ‘behind the scenes’ project we have been busily working on during the year is our new website, due to launch in mid-2015. The

CCLG website is already a vital resource for our membership, housing essential documents like treatment guidelines as well as education resources. The new site aims to also be a hub for parents of children with cancer, with a wealth of information about every stage of the cancer journey. Figures released last year highlighted that over the last 40 years, 15,000 more children have beaten cancer than would have done if survival had remained the same as in the 1970s. CCLG is proud to have played a key part in improving survival, which has more than doubled over the last 40 years thanks to research and improved treatment. However, this is not the whole picture. These improvements have not been seen in all types of cancer. Some childhood cancers still have a poor prognosis, and many treatments leave long-lasting side effects. Further research is needed to ensure every child diagnosed with cancer has the best chance of survival and is able to lead a full life after treatment. Until then, we will continue working together to beat childhood cancer.

Dr James NicholsonCCLG Chairman

Rachel WilcoxChair of CCLG Board of Trustees

Ashley GambleCCLG Executive Director

2 • CCLG Annual Review 2014

Welcome

Jacob, aged 2

Supporting researchResearch is essential for improving the diagnosis of children’s cancers, finding kinder treatments and new cures. CCLG supports a wide variety of research and, through the CCLG Tissue Bank, we help scientists to get a better understanding of the nature of childhood cancer.

CCLG Tissue BankChildhood cancers are rare, and having access to tissue samples is vital for researchers studying the biology of cancers. The national CCLG Tissue Bank, hosted at Newcastle University, provides an invaluable source of tissue to help researchers advance our understanding of cancers and to improve diagnosis, treatment and outcomes for children.

A considerable amount of work over the last three years has brought together the tissue collection held across the UK, and established a fully centralised tissue bank. Following the award of a further three year grant to support the bank by Cancer Research UK, this year has seen the start of significant work towards the development and enhancement of the collection. This will support our aim to become the primary resource for researchers accessing children’s cancer samples for research both in the UK and overseas.

Supporting clinical trialsCCLG is supporting the current clinical trials into soft tissue sarcomas, including rhabdomyosarcoma. There are now more than 600 patients registered on these trials. Of these, at least 500 have provided tissue for the process of central pathology review, which confirms the accuracy of the diagnosis. This helps to inform treatment, and interpret the results of the clinical trial by allowing researchers to look at patterns between diagnosis,

treatment given, and the clinical outcome for each patient.

For these trials, the pathology review takes place at the Royal Manchester Children’s Hospital, and CCLG is supporting the costs of this.

Using imaging to improve outcomesA new approach to scanning, known as functional imaging, has shown promise for rhabdomyosarcoma, in research funded by CCLG and undertaken at the University of York.

The team carried out a ‘systematic review’ of the published literature from around the world, to find out if there was good evidence to show that functional imaging would help in planning the most appropriate treatment for cases of rhabdomyosarcoma.

We now know from their research that functional imaging has potential, and will therefore be incorporated into a new trial which is currently being planned to test new treatments for rhabdomyosarcoma. Including functional imaging will give us a better idea of whether this type of imaging can replace or add to current tests to help improve outcomes for children with rhabdomyosarcoma.

CCLG Tissue Bank 2014

1,100tissue samples banked

11new biological studies

approved

497samples released to

researchers

35active studies using

the bank

The CCLG Tissue Bankis funded by Cancer Research UK and CCLG


Testing new ideasIn 2014, CCLG was able to fund three pilot research studies exploring new ideas in childhood cancer. The studies all make use of samples from the CCLG Tissue Bank, and the aim of these ‘pilot grants’ is to enable researchers to test an idea or obtain preliminary data that will lead onto more extensive research projects.

The pilot studies we funded were investigating hepatoblastoma, the most common form of primary liver cancer in children, high risk neuroblastoma, one of the most difficult childhood cancers to cure, and craniopharyngioma, a type of brain tumour in children that causes severe and long-term health problems.

Arveer, aged 2

Supporting familiesReliable information is vital when your child is diagnosed with cancer. Our range of publications are there for parents, families and young patients to help them understand their diagnosis, treatment and what to expect now and in the future.

Information resources for patients and familiesDuring 2014 we produced a number of new publications, and reviewed and revised many more from our portfolio, to ensure that our information resources are up-to-date, accurate and reliable.

• We published a new edition of ‘Children and Young People with Cancer: A Parent’s Guide’. Considered to be the definitive guide for parents and carers of a child who has been diagnosed with cancer, this new edition has been designed to be much more user friendly, and covers a wide range of important information.

• As well as booklets and leaflets, we now produce a range of factsheets, allowing us to expand the number of topics we cover. In addition to new factsheets on veno-occlusive disease and stem cell transplants, we also produced factsheets about individual types of cancer to accompany the ‘Parent’s Guide’.

• This increase in the number of publications on offer meant we distributed around 30,000 booklets, leaflets and factsheets during the year, all free of charge, to patients and families.

Contact magazineOur quarterly magazine continues to be popular, providing a helping hand for families of children and young people with cancer. Themes covered during 2014 included chemotherapy and ‘moving on’.

Quality assuredThree years after first achieving Information Standard accreditation for our publications, we were delighted to be re-awarded this quality mark in 2014.

The Information Standard is a national scheme, led by NHS England, that identifies trustworthy health and social care information that is produced through rigorous processes, using expert input, and is regularly reviewed.

All of our information booklets, leaflets and factsheets - as well as Contact magazine - carry the Information Standard mark. This means that parents, families and patients relying on them can be assured they are accurate, up to date and produced by experts.

Aftercure ‘highly commended’The CCLG booklet ‘Aftercure’ was Highly Commended at the 2014 British Medical Association Patient Information Awards. Aftercure is aimed at teenagers and young adults who have survived childhood cancer, and covers a range of useful topics such as follow-up and future care, education, jobs, lifestyle and fertility.

The judging panel said “This is a really strong example of patient information that pulls information together for service users, but more importantly empowers and inspires them to get the most out of life.”

“This is a really strong example of patient information that... inspires them to get the most out of life”

BMA Patient Information Awards judging panel, on ‘Aftercure’


CCLG ANNUAL REVIEW 2014 7Bringing together professionals and familiesIn May, we worked with Bethany’s Wish, the UK Wilms’ Tumour Charity, to organise the first UK Childhood Cancer Conference.

The hugely successful event brought together parents, researchers and healthcare professionals to discuss the latest research into childhood cancer. The conference provided the opportunity to draw attention to issues that prevent more effective treatments and better outcomes for children, as well as raise awareness of childhood cancer.

“This has been a wonderful meeting of professionals and parents - very refreshing and I leave today with a great deal to think about and to share with colleagues”

Conference participant

Our publications are available free of charge from all children’s cancer principal treatment centres, and many shared care hospitals. You can also download or order copies directly from our website.

19 new publications including 14

cancer specific factsheets

30,000 booklets, leaflets

and factsheets distributed

13publications reviewed

and revised

CCLG Publications 2014

Films of the presentations from our meetings are available on our website

Improving treatment and careCCLG is the association for all professionals involved in the treatment and care of children with cancer. Our members provide the best possible treatment and work hard to ensure that children and teenagers have a greater chance of survival and a better life after treatment.

Working together to beat childhood cancerOur membership represents all disciplines involved in the care of children with cancer, and is based in, or linked to, a network of principal treatment centres across the UK. It is in these centres that the majority of children with cancer are treated.

Our membership continued to grow and diversify during the year, with now more than 700 members representing a wide range of disciplines.

CCLG is the voice of children’s cancer professionals, offering advice to the goverment and other bodies, and responding to stories in the media. We advise NHS England on the development and commissioning of services for children with cancer, and we ensure that our members provide feedback to bodies like NICE, who produce guidance and quality standards for health services.

During the year, we held a number of scientific and educational meetings for our membership and the wider community of healthcare professionals, offering the opportunity to network, learn about the latest research and clinical practice, and share new ideas.

Clinical treatment guidelinesClinical treatment guidelines are a vital part of clinical practice, and help ensure consistent, safe and standardised care.

The CCLG Guidelines Development Committee supports our Special Interest Groups to develop high-quality, evidence based guidelines and other treatment recommendations where there isn’t a current or planned clinical trial.

In 2014, the committee reviewed all of the current available guidelines, and oversaw the production of six new treatment recommendations. Work is also ongoing on a number of major pieces of work, including the production of eight guidelines for rare endocrine tumours.

Playing our part in a European plan for childhood cancerIn September, 160 paediatric oncology stakeholders, including CCLG, representing 31 countries, attended a conference in Brussels and left committed to a strategic undertaking with life-enhancing potential: a long-term European Paediatric Cancer Plan for better care and research for children and adolescents with cancer.

The SIOPE-ENCCA Conference 2014 ‘Joining Efforts for a Brighter Future for Children and Adolescents with Cancer’ aimed to ensure the widest possible consensus on a comprehensive

‘roadmap’ designed to increase the cure rate in poor prognosis cancers, eradicate inequalities in care across Europe, and improve the quality of life of childhood cancer survivors.

Supporting the next generationCCLG is committed to supporting early-career childhood cancer professionals to ensure that treatment and care continue to improve.

During the year, we worked with the National Cancer Research Institute to develop a trainee scheme for the Children’s Cancer and Leukaemia Clinical Studies Group. This important group, and its subgroups with responsibility for specific types of cancer, is responsible for the development and management of clinical trials into childhood cancer. We have provided bursaries to support trainees to become members of the subgroups, enabling them to attend meetings, be mentored by experienced researchers, and gain insight into research activity throughout the UK.

We also provided two scholarships to trainee members of CCLG to attend the ESO-SIOPE Masterclass in Paediatric Oncology in May. This unique educational programme is designed for young paediatric oncologists who want to improve their skills in the management of common childhood tumours.


Helping children in the developing worldMany CCLG members are part of our Paediatric Oncology in Developing Countries group (PODC). The group supports individual trainees, junior doctor and nurse training, and projects in various developing countries. Members of the group also have individual links with projects in many countries, including Pakistan, Malawi and Nepal.

In 2014, PODC organised two Foundation Oncology Skills

Workshops for paediatric nurses and junior doctors in India. For the majority of delegates, this was their first formal educational opportunity related to childhood cancer. Feedback was excellent and further workshops are planned for 2015.

The group has also written a series of leaflets offering basic advice and information to help those caring for a child when they are having treatment for cancer. The leaflets have been translated into a number of languages, with more planned for this year.

Thank you to our supportersCCLG is heavily reliant on the generous support of all of our fundraisers who do some amazing things to raise money. We would like to say a huge thank you to everyone who has supported us during the year.

There’s no such thing as bad weather for cycling!Rachel Wilcox (Chair of our Trustees) and her husband Stephen raised funds by taking part in the RideLondon-Surrey 100 - on their tandem. Overall they raised an amazing £2,400.

“It was wet. We did know in advance it would be soggy - the forecasters had told us that the tail-end of hurricane Bertha would be coming over the south of England on the day of the race. So Stephen and I were prepared with cagoules - and after all, the skin underneath the cycling kit is waterproof, isn’t it?

In fact, as we started off from the Olympic Park it was barely drizzling. Later, the heavens opened. You know that feeling when you really don’t think you can get any wetter? At one point the floods were ankle deep - while we were on the bike!

Cheered on by the huge crowds (with separate cheers of “go tandem”!) we crossed the line in 7 hours and 34 seconds (oh, if only I hadn’t bothered taking the waterproof off to cross the finish line!) and collected our medals and goody-bags. Would we do it again? In a heartbeat. We’re already in the ballot for 2015. So, is there any weather too bad for cycling? No - only fools daft enough to go out in it!”

Conor’s New York City MarathonOn 2 November, Conor Linnane ran the New York City Marathon for CCLG.

“This was my second consecutive year running the New York City Marathon. I decided I wanted to run for a charity which I believed was worthwhile, one which, after a long training session or when I have hit the wall at 21 miles, I could think of and be inspired to continue and push harder. This was how I came to find CCLG.

The crowd of New Yorkers supporting is amazing, the noise throughout was absolutely incredible with bands playing and people cheering you as you run. I wore my CCLG shirt and on a few occasions I got calls of “go on CCLG you can do this” or one time “come on you Brit!”

I thoroughly enjoyed the race and felt good throughout. At two points, mile 21 and mile 24, I hit a wall and this is when I began to think of the amazing work that CCLG carry out. At your lowest point on a marathon thinking of something as inspirational as this and knowing that you are representing them allows you to dig deep and reminds you to keep pushing forward. To have managed to finish was incredible and I could not have been prouder of myself and to have been wearing my CCLG top.”

“I would like to thank CCLG for allowing me to represent them. Moreover, I would like to thank all the staff for their support from start to finish, I could not have asked for any more from a charity.”

Conor Linnane

We have guaranteed charity places in several major sporting events each year, including RideLondon-Surrey 100, the London Marathon, the World Triathlon London and the British London 10k. Find out more about joining #teamCCLG on our website


“I wanted to run for a charity which I believed was worthwhile”Conor Linnane

Rachel and Stephen Wilcox

6-year-old Kaida took part in the Sunderland Color Run 5k, raising a fantastic £132.50

13-year-old Anjali raised more than £6,200 by shaving off her long hair. She also donated her hair to The Little Princess Trust who make wigs for children who have lost their hair due to cancer treatment

Team HSBC setting off from Canary Wharf

Sarah and Liz’s Three Cities Cycle

Dan Hart raised £1,730 by running in the Croydon Half Marathon

In December we held our first ‘Christmas Jumper Day’ fundraiser. Supporters up and down the country spent they day in their most festive knitwear, having fun and raising £5,000 for CCLG. Below are our friends at Senior IT, and the CCLG team showing off their woollies!

The ‘Crazy Crew’ - Josh A, Amelia, Josh M and Mary organised a sponsored bike ride and car boot sale, raising a brilliant £551.88

We’d like to say a huge thank you to all of our regular donors who have supported us throughout the year, either with direct donations or through payroll giving. To find out about making monthly donations to support our work, please visit our website.

Team HSBC hit the roadOver the first bank holiday weekend in May the HSBC Corporate Sales Desk with colleagues from HSBC London, Paris and Germany cycled 468km from Canary Wharf to Dusseldorf to raise funds for CCLG.

The first day of their expedition saw them leaving the Canary Wharf office around 8am. After several hours of cycling and about 80km they restocked with a traditional English roast in the village of Tiptree before travelling the final 70km to Harwich. The next leg of the journey was the overnight ferry crossing to the Hook of Holland.

The second day started with a 6.30 ferry wake up call! After docking and unloading the bikes they had a few more small river ferry crossings followed by a 100km ride towards a lunch stop in Etten Leur.

The 150km on the final day was completed by around 2.30pm when the team was greeted in style by colleagues from the Dusseldorf office, with each rider being greeted with a shot of Killepitsch on arrival!

The Hare and the Tortoise story was played out with a perfect rendition of early rising and determination beating speed (and some bad luck with punctures and broken spokes!), but the team all collected together at the end to ride to the finish line.

Their German colleagues welcomed them with traditional food, plenty of beers and the icing on the cake of an additional £1,000 for the Children’s Cancer and Leukaemia Group.

In all, everyone made it, and the few additional injuries were thankfully all healable! The team were kindly supported by colleagues and family - both in raising funds and during the event itself. Overall, including generous matched giving from HSBC, the team, raised an incredible £25,000. Our sincere thanks go to Jono and the team for their huge achievement!

Sarah’s Three Cities CycleIn September 2013 Sarah Crossland contacted us to say that she and her friend Liz were planning to take on the 3 Cities Cycle Challenge in May 2014 to raise funds for two charities, including CCLG.

In the run up to the big cycle challenge, Sarah and Liz hosted numerous events such as race nights, bingo nights and band nights, which even included brave people having their heads shaved to raise funds for their chosen charities.

Speaking about the challenge, Sarah said “The 3 Cities Cycle Challenge was a mammoth trek of 360 miles over 4 days covering 3 countries. We left in the rain on the 28th May from Stratford London and cycled 96 miles through the hilly countryside of Essex to Harwich where we got on the overnight ferry to the Hoek of Holland. On Day 2 we cycled 72 miles again in the rain and wind from Hoek to Amsterdam. Friday was the longest day of cycling from Amsterdam to Turnhout which was 115 miles and involved 10 hours cycling! Thankfully the weather improved and the sun came out. Finally, on day 4 we cycled 77 miles from Turnhout to Brussels over some difficult hilly terrain, arriving in the central square in Brussels on Saturday afternoon where friends and family were waiting to greet us. We found the hill cycling difficult and both suffered strains and discomfort, but the messages of support we received from friends and family kept us going!”

Altogether Sarah and Liz raised the fantastic sum of almost £6,000 for their chosen charities.

Special named fundsCCLG is able to ‘ringfence’ fundraising and donations to create a Special Named Fund. Special Named Funds can be directed towards a specific area of our work, such as research relating to a particular type of cancer.

For more information about Special Named Funds and how they support our work, visit our website.

Team Jake‘Team Jake’ has been raising funds to support CCLG’s work into rhabdomyosarcoma since Jake sadly lost his battle with this disease in 2008, aged just 5. Led by Jake’s parents, Jo-ann and Nick, and supported by their friends, family and local community, 2014 was another busy year for Team Jake.

In April, Jo-ann took on the London Marathon, and Jo-ann’s sister, Samantha ran in the Raleigh Rock n Roll marathon in North Carolina on the same day. Through sponsorship for their marathons they raised an incredible £6,000! In September, Nick and a group of friends undertook a 100-mile cycle from Manchester to Barrow-in-Furness, raising another £2,000. Since establishing The Jake Ellis Fund at CCLG, almost £90,000 has so far been raised in Jake’s memory.

Toti’s storyThomas ‘Toti’ Worboys sadly passed away in July 2014. Since then, his family have been tirelessly raising funds for CCLG in Toti’s memory, to support research into childhood leukaemia. Here, Toti’s Dad Nick shares his story.

“All children are special, however, right from his birth Toti was extra special. He arrived into the world a lot faster than his elder brother. So quick, that Amelia was caught off guard and didn’t have time to get to the hospital; so we delivered him on our own at home.

He was an angelic, cute, healthy and happy little boy. At the age of two when he broke his leg, we didn’t suspect that there was anything wrong with his bones. However as he grew up, he started to fracture more bones. Eventually he was diagnosed as having a rare genetic disease called Olliers, which causes cartilage lumps and weaknesses within his bones. It was NOT a life threatening condition and leukaemia was never on the radar. However, he was supposed to look after his weaker bones. Easier said than done, as boys will be boys, so accidents did happen. He was always so brave with the many procedures and operations to fix his bones and remove the benign lumps.

Olliers stopped him from contact sports and games but other than that he led a very normal life. Toti was mad keen on sport, desperate for success. He never took no for an answer. He was determined to play tag rugby, cricket, hockey and athletics.

Watching rugby was our greatest pleasure. Our most special times have been supporting the mighty Bath Rugby. In April 2014 his brother was away, so Toti and I went to see the match on our own.

I have one of my fondest memories of him from this match. He decided he wanted to sit on my lap and we talked about the programme, the players, the game and tactics. Best of all we cuddled for the whole of the match. At the time I knew it was one of those special moments that will stay with me forever.

Toti was good company, he would love to chat for hours on end and he was interesting and a good listener. He was naturally empathetic, soft, gentle and kind hearted. He was a good boy who was never in trouble.

Toti was blessed with a most infectious sense of humour. He could make us all laugh even at the most inappropriate moments. Trying to discipline our children required impossible levels of self control, as soon as I put on my serious voice, he would automatically burst out into uncontrollable laughter. Resistance was futile so we’d all be crying with laughter. He was full of joy; delivered with a beautiful smile. All good things come to an end. Early in July 2014 Toti had a minor operation on his leg. Ironically we were completely relaxed about the operation, as this was the last one on the list and we could look forward to a period of normal family life. Toti came home and was slow to recover. Late afternoon on July 14th he took a turn for the worse. The paramedics took him to hospital with what we thought was a minor infection. Events escalated quickly. We had no idea that he had acute leukaemia which triggered a terrible bleed in his brain. It all happened so quickly. While he was

still with us we told him how much we loved him and that we couldn’t be any more proud of him. Amelia and I brought him into this world on our own, and so to complete the circle just the two of us laid with him as he drifted off to sleep in the early hours of July 15th. So it is with the greatest sadness that Toti has moved on to a higher place. We remain positive and motivated to keep his memory alive. It’s a comforting thought that Toti can make a difference even after death. Childhood leukaemia is one of the biggest causes of death in UK children. Clearly helping to cure childhood leukaemia is a massive goal. Consequently we have set up a memorial fund to raise money for CCLG. We’ve chosen them as they will ringfence the memorial fund and we can direct the money towards childhood leukaemia research. We aim to raise over £100,000.

We have been deeply moved by the amazing reaction to support the memorial fund. The owners, staff and players at Bath Rugby continue to amaze us with their love and support. We will organise more bucket collections at Bath games. There are many other inspiring individual and team events being planned to hit our target of £100,000. The list includes the London and Boston (UK) Marathons, Bath Half Marathon, canoeing from Stratford to Bristol, cycling from John O’Groats to Lands End, a golf day, a clay shoot, school events, work events and Scott the plumber shaving off his beard!”


Toti aged 11, June 2014

How we raised and spent our fundsThe following information is an extract from our audited accounts for 2014. If you would like a full copy of our accounts, you can download them from the charity commission website.

Income 2014 Notes

IncomeRestricted donations are where the donor specifies that funds are to be put to a specific use - for example research into a particular type of cancer. We are always happy to restrict donations to a specific area of our work.

Income from charitable activities includes, for example, fees from professionals to attend our meetings.

We are grateful to the University of Leicester for their continued support, including their contribution towards the costs of our office accommodation.

ExpenditureProfessional association - improving treatment and care includes activities such as producing treatment guidelines, educational and scientific meetings, and the CCLG members’ website, a vital resource for professionals working in the field of children’s cancer.

The increase in the costs of generating funds has resulted in a large increase in donations during 2014 compared with 2013. The costs of generating funds and governance of the organisation account for 15p in every £1 we spend - therefore 85p is spent directly on our work improving treatment and care for children with cancer, providing information for patients and their families, and funding research into childhood cancer.

General donations

Restricted donations

Legacies

Subscriptions

Investments

University of Leicester support

Charitable activities

2014 2013 General donations £274,733 £153,951Restricted donations £91,570 £65,928Legacies £142 £600Subscriptions £144,070 £143,141Investments £14,977 £23,012University of Leicester £37,500 £37,500Charitable activities £26,694 £62,905

£589,686 £487,037

Support for research

Information for patients and families

Professional assocation - improving treatment and care

Governance

Costs of generating funds

2014 2013 Support for research £113,637 £123,014Information for families £114,132 £111,507Professional assocation £327,846 £323,342Governance costs £12,480 £13,451Generating funds £85,520 £54,301

£653,615 £625,615

Expenditure 2014


Sophie, aged 11

Holly-May, aged 2

Looking forwardWe have ambitious plans for the future, in support of our mission to beat childhood cancer. However, we can only succeed with your continued support.

Information and support for familiesIn 2015 we will launch our new website. We’ve been working hard to increase the amount of information and support available online, and our new site will be a hub of information about childhood cancer for parents and families. Our members’ website will also be improved, ensuring that the professionals caring for children with cancer have access to the latest resources.

We will continue to review and expand our portfolio of information resources for families and patients. In 2015, we will also launch ‘Welcome back’, a guide for teachers helping children and young people returning to school after a cancer diagnosis.

Increasing support for researchWith the support of our Special Named Fund fundraisers, we will increase the number of research projects we support during 2015.

We will continue to improve the resources available to researchers through the CCLG Tissue Bank, with improvements in the amount of clinical data available with tissue samples. We’ll also fund a series of innovative pilot projects that make use of the CCLG Tissue Bank and increase our knowledge of the biology of childhood cancer.

Bringing together professionalsWe will continue to guide the development of best practice and ensure it is shared across the paediatric oncology community. We will also continue to advance education and professional development, to improve knowledge of childhood cancer and care for all children.

Working togetherWe will build on our collaborations with other childhood cancer charities and organisations. We’re working with Neuroblastoma UK to enhance the information resources available for parents of a child with neuroblastoma. Working with Bethany’s Wish - The UK Wilms’ Tumour Charity, we’ll organise another Childhood Cancer Conference to bring together parents, professionals, researchers and charities. Finally, we’re working in partnership with a number of charities to arrange ‘Gold Ribbon Walks’ during September, Childhood Cancer Awareness Month.

Join #teamCCLG!We can only continue our vital work with your support. There are many ways to get involved, from raising funds to helping us review our information resources to patients and families. You can find out more on our website, www.cclg.org.uk

“It is crucial that we find a cure! And when you have spent time in a children’s cancer ward and seen babies and young children slipping away, and lose the most precious thing in your own life, you really know how important it is to give support”

Jill, CCLG Supporter

In 2014, the major childhood cancer charities, including CCLG, worked together to mark Childhood Cancer Awareness Month in September for the first time. Many of our supporters organised events to raise funds, or chose to wear a gold ribbon in support of childhood cancer awareness. We’re busy planning events for September 2015 - please visit our website for details of how to get involved.

CCLG Annual Review 2014 • 19

Children’s Cancer and Leukaemia Group is a leading children’s cancer charity and the UK and Ireland’s professional association for those involved in the treatment and care of children with cancer. Each week in the UK and Ireland, more than 30 children are diagnosed with cancer. Two out of ten children will not survive their disease.

Over the last 35 years, CCLG has played a key role in the major improvements in survival rates and the standards of care for children. We bring together childhood cancer professionals to ensure all children receive the best possible treatment and care.

There are still some childhood cancers with a poor outlook, and many treatments can have long-lasting side effects. Further research is therefore vital, and the ultimate aim of CCLG is to cure as many children as possible while reducing the short and long-term side effects of treatment. We fund and support research into childhood cancers, and we help young patients and their families with our expert, high quality and award-winning information resources.

Children’s Cancer and Leukaemia GroupUniversity of LeicesterClinical Sciences BuildingLeicester Royal InfirmaryLeicester LE2 7LZ

0116 249 [email protected]

ChildrensCLG CCLG_UK

Registered Charity number 286669

annual review 2014 - cclg cclg...in this important role. dr james nicholson, consultant paediatric...

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