CHILDHOOD TUMOUR TRUST (Charity Number 1165777) ## **CHILDHOOD TUMOUR TRUST** Registered Charity Number: 1165777 **Trustees’ Report and Financial Statements** **For the year ended** **31[st] March 2022** 1 CHILDHOOD TUMOUR TRUST (Charity Number 1165777) ## **CONTENTS OF THE FINANCIAL STATEMENTS FOR YEAR ENDED 31[ST] MARCH 2022** ## CONTENTS Organisational Information Report of the Trustees Financial Activities Balance Sheet Independent Examiner’s Report 2 CHILDHOOD TUMOUR TRUST (Charity Number 1165777) ## **REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31[ST] MARCH 2022** The committee of Childhood Tumour Trust presents its annual report and financial statements for the year ended 31[st] March 2022. ## **ORGANISATIONAL INFORMATION** |**Name of Charity:**|Childhood Tumour Trust| |---|---| |**Registered Charity Number:**|1165777| |**Legal Form:**|Charitable Incorporated Organisation (CIO)| |**Governing Document:**|Constitution adopted 26 February 2016| |**Committee Members:**|Vanessa Martin| ||Martin Pomfret| ||Joanne Tully| ||Donna Gilbert| ||Dan Coleman| ||Graham Attfield| ||Dianne Lawrence| ||Elizabeth Brooks| |**Bankers:**|The Co-Operative Bank| |**Independent Examiners:**|Melanie Jarra| 3 CHILDHOOD TUMOUR TRUST (Charity Number 1165777) ## Childhood Tumour Trust Trustees Annual Report for the Period ended March 2022 STRUCTURE, GOVERNANCE AND MANAGEMENT Childhood Tumour Trust has a committee of Trustees governed by a constitution. It became a registered charity on the 26[th] February 2016. Day to Day management of the Association is vested in the Trustees, who are elected and co-opted under the terms of the constitution. ## BOARD OF TRUSTEES There are currently 8 trustees of Childhood Tumour Trust. The Board of Trustees shall be administered by no less than three and no more than 15 members. Trustees and members will be elected for a period of up to one year at the AGM each year. The names of the Trustees are shown on page 2 of this document. The trustees meet once a year in addition to every two months and informal meetings. ## **OBJECTIVES** To support children, young people and their families affected by Neurofibromatosis Type 1 and to raise awareness of NF1 with medical professionals. Raise awareness of NF1 through campaigning, working alongside other organisations such as Institute of Health Visiting, and NHS England to improve both diagnosis and better care for people with NF1. Link People to the best information resources for NF1 Fundraise and organise social events and activities for families and children. ## **ACHIEVEMENTS, PERFORMANCE AND FUTURE PLANS** Neurofibromatosis Type 1 (NF1) is an incurable medical condition which very few people have heard of. CTT (Childhood Tumour Trust) supports children and their families in a variety of different ways 4 CHILDHOOD TUMOUR TRUST (Charity Number 1165777) 1) We continue to run a 24/7 Facebook support group for families who have a child under the age of 30 with NF1, and children and young adults can also join the appropriate support group. We currently have over 2300 members and this grows weekly. The trustees provide constant replies to people’s worries and concerns linking with our medical board where appropriate helping people and our SEN adviser helps families access services and negotiate with schools. Advice is provided on a range of topics from disease complications to disability living allowance to how to keep their child still in an MRI scan! The group is a very important part of our work ensuring that people know that they are not alone in their journey with NF1. 2) Our Annual trips to Chessington and Alton Towers were successful and our aim is to continue these as annual events. 3) We had another successful PGL which continues to be an integral part of Childhood Tumour Trust. We now run young adults camps on top of the children’s camps. 4) We took 13 young adults to New York for an NF Summit, this was really successful and led to the formation of the young adult group – led by two youth ambassadors and a youth co-ordinator. 5) We have produced a Dealing with Diagnosis booklet with the collaboration of a group of NF parents. It has been finalised and printed interest in translating it to other languages has been shown. 6) ‘Patches and the Diagnosis,’ our booklet on explaining a diagnosis of NF1 to a child, was translated into Greek by the Greek members of NFPU, the umbrella European group. Our Chair was invited to Athens for the launch which reinforced our collaboration. 7) Again on 17 May World NF Awareness Day we encouraged people to do anything using blue and green, this ranged from children wearing blue and green to school to cake sales, to picnics with green and blue food, napkins, clothes etc. 8) We continue to work with the Institute of Health Visiting and attended two conferences highlighting our CPD module and encouraging uptake of our training. Our CPD module was updated and continues to be shared. 9) Our Dealing with Diagnosis workshops, which we run with Rareminds (a mental health service for Rare Diseases), continue to be filled and we are now adding workshops such as transitioning to Adulthood. 10) Our social following continues to grow, on Twitter, Facebook and Instagram. 11) We have been working with Patient Led Research Hub (University of Cambridge) and have produced two surveys; one for patients and one for professionals which have now been completed and we are putting together the results which will be presented in Edinburgh to the BPNA. 12) Our health Sketch on NF1 continues to grow and we are at over 221,000 views. 13) Our website is growing and our ranking on search engines is rising. 5 CHILDHOOD TUMOUR TRUST (Charity Number 1165777) We aim to continue the work that we have done and to continue to reach out to more families, children and young people affected by NF1 14) CTT continues to represent the UK in the European Patient Group NFPU. - 15) The regional groups are starting to do days out again post Covid - like Build a Bear visits. ## **FUTURE PLANS** We aim to continue the work that we have done and to continue to reach out to more families, children and young people affected by NF1 We aim to build on all our achievements and to reach out to more families, children and young people affected by NF1 and to continue to raise the profile of NF and Childhood Tumour Trust (CTT) and to work on a pathway of care with the NHS for children with NF1. We aim to continue to fund our PHD student, to develop more booklets including one about bereavement, to continue our counselling and workshops through Rareminds, to continue to run camps, and continue to attend relevant conferences and address health inequalities. ## Public Benefit The Trustees have considered their duty set out in Section 17 of the Charities Act 2011 to have due regard to public benefit guidance published by the Commission, and in their opinion the foregoing report on the achievements and performance demonstrates that they have compiled therewith. ## FINANCIAL REVIEW ## Financial Position The Treasurer reported that this year had been financially stable and CTT had achieved all it had set out to do. 6 CHILDHOOD TUMOUR TRUST (Charity Number 1165777) Receipts in this year were £149,667.09 and payments were £95,934.67. Reserves and Investment Policies Childhood Tumour Trust will continue to build up its reserves to enable the Charity to fulfil its objectives and financial plans Approved by the Management Committee on…… and signed on their behalf by V. Martin ……………………………………… Dated 19[th] January 2023 (Trustee) 7 CHILDHOOD TUMOUR TRUST (Charity Number 11657771 Financial AL*vibes 2021 . M8r¢h 2022 TOTP kn¢dm• 1&5,159.0 TOT 2,$14 31.T2182 2S1. 17,7ty). Inwranc45 070.06 5,528.a3 2,727.61 928.16 l.b87.06 1lJl.02 114.64 23.097.07 INCOMEIIEXPFNOITiJREi CHILDHOOD TUMOUR TRUST (Charity Number 11657771 Balance Sheet As of March 31, 2022 TQT Fuod ca￿ •tt•r* •id In h•J Co (g Bart NETCVHREP4T ￿ET8 Crp*qN" *iwnts Pay PAYÉ & MI 71.&J NEI CURRE￿ ASSETS ILLABifflÈSj TOIAI Asssrs LES9CUAFif￿i￿￿IUrlES TOIAL NET aSSErs IiwirriESI t13510￿? Cwty hJNJs r.ir4 FAuty 79h17.40 4&NJ ,732A2 Flnancial Athi TOT*1 thcoffl• 4.5r401 145.159.1 31.721Xd 2$1. 17.7C#). Insuw 870A6 5.$28.43 2.727.61 4.428.18 1.087.06 1131.62 614.64 Le9￿ aryl wotees￿n81I Ojher Prde¢fyord SeTrk88 23.C87.07 OPERITIN(i KC t4ET INcOl￿1£xPETr4￿rnj1I£1 ## **Childhood Tumour Trust (Charity Number 1165777)** _INDEPENDENT EXAMINERS REPORT TO THE TRUSTEES OF THE CHILDHOOD_ _TUMOUR TRUST FORTHEYEAR ENDED 31't MARCH 2022_ I report on the accounts of the Childhood Tumour Trust for the year ended 31 March 2022 ## **Respective Responsibilities of Trustees and Examiner** The Charity's Trustees are responsible for the preparation of the accounts. The Charity's Trustees consider that an audit is not required for this year under section 144 of the Charities Act 2011 (The Charities Act) and that an independent examination is needed. It is my responsibility to: Examine the accounts under section 145 of the Charities Act To follow the procedures laid down in the general Directions given by the Charity Commission (under section 145(5)(b)) of the Charities Act, and To state whether matters have come to my attention. ## **Basis of independent examiners report** My examination was carried out in accordance with General Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a "true and fair" view, and the report is limited to those matters set out in the statement below. ## **independent examiners statement - matter of concerns** I have completed my examination. I can confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect: l.Accounting records were not kept in respect of the Charity as required by section 130 of the Charities Act; or 2 The accounts do not accord with those records I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Funds (assets) carried forward at the end of the Financial Year totalled £134,956.89 M Jarra ACMA 15 The Beeches Silsoe Bedfordshire MK45 4FD