THE CJD SUPPORT NETWORK ANNUAL REPORT AND ACCOUNTS FOR THE YEAR ENDED 31[st] MARCH 2022 Associates House 118a East Barnet Road New Barnet Hertfordshire EN4 8RE ## TRUSTEES Prof. Richard Knight (Chairman) Andy Tomaso (Treasurer) Anita Tipping (Secretary) ## BANKERS Lloyds Bank Plc 1 Claremont Road Surbiton Surrey KT6 4QS Sorting code 30-98-62 ## REGISTERED CHARITY NUMBER 1097173 ## INDEPENDENT EXAMINER Weaver-AFS Ltd Associates House 118a East Barnet Road New Barnet Hertfordshire EN4 8RE Page 1 of 6 **THE CJD SUPPORT NETWORK REPORT OF THE TRUSTEES** ## **FOR THE YEAR ENDED 31st MARCH 2022** The Trustees are pleased to present their report together with the financial statement of the charity for the year ended 31[st] March 2022. Legal and Administration information set out on the front page of this report. ## STRUCTURE, GOVERNANCE AND MANAGEMENT The CJD Support Network is governed by an independent constitution and administered by an executive committee. The officers and other members of the committee are elected annually at the Annual General Meeting and there are currently three trustees. ## OBJECTIVES AND ACTIVITIES To support patients and their carers affected by Creutzfeldt Jakob Disease and all human prion diseases by the provision of information, advice and support and to advance scientific and medical education and research in topics related to Creutzfeldt Jakob Disease and all prion diseases. ## ACHIEVEMENTS AND PERFORMANCE The Network continues to be the principal charity for Prion disease and maintains good links with both the Centres of Excellence in the UK. We have been providing emotional and practical support to families affected by all forms of CJD and to those who are informed that they are at higher risk of CJD through secondary transmission i.e. blood transfusion and surgery instruments now for over 20 years. In the period of this report we have responded to numerous helpline calls and agreed 6 care grants to families in need through caring for a loved one with all forms of CJD. In November 2021, following the retirement of our National Co-ordinator, Gill Turner, in September 2020, we were delighted to welcome Beth Marsh as our new National Co-ordinator on a part-time basis. Beth was already well-known to us a committee member previously, and has brought great passion, enthusiasm and skill to the role. We were also delighted to be able to host our Family Support Day in November 2021 in Manchester following 2020’s postponement due to the Covid-19 pandemic. The Family Support Day gives families the opportunity to meet with other families who have experience with CJD, and also provides information from presentations given by expert speakers. We received a lot of positive feedback from attendees. We have continued to update our website with relevant information and news we feel is of use to anyone who wishes to find out more about CJD and how we can offer support. The charity is also a member of the international support network for this disease and is often approached by families in European countries and worldwide, including those where no support is available. Page 2 of 6 ## FINANCIAL REVIEW We were the generous recipients of many donations throughout 2021-22, with major contributions from general Gifts and Donations totalling £11,106 and In Memoriam donations totalling £17,058. Our overall income for year ending March 2022 was £35,269 This included £1,308 raised from our annual fundraising raffle drawn at our Family Support Day in November. Our income was down on the previous year by £21,961 Our expenditure for the year was £44,070. This included a research grant payment that although had been awarded in our financial year ending March 2019, was paid in this financial year. Other expenditure was broadly in keeping with previous years, notwithstanding the reduction in overall salaries paid as we did not have a full time National Co-ordinator in place. As a result of the one-off research grant expenditure, we showed a financial loss for year ending March 2022 of £8,801 The time, effort and donations contributed by everyone is very much appreciated and we will endeavour to ensure that we continue to make the best use of all the monies raised. It continues to be the policy of our Charity to maintain sufficient reserves to safeguard against any future fluctuations in income and expenditure so the Network may continue operating as long as possible. ## PLANS FOR THE FUTURE The Network always considers its main purpose to be for the support of patients and carers affected by Creutzfeldt Jakob Disease and increasingly also those at risk through secondary transmission. Our priority will be to maintain our services in the present economic climate. Prof. Richard Knight Chairman Signed: Page 3 of 6 THE CJD SUPPORT NETWORK INDEPENDENT EXAMINER’S REPORT ## **Independent examiner’s report to the trustees of CJD Support Network** I report to the trustees on my examination of the accounts of the CJD Network (the Trust) for the year ended 31 March 2022. ## **Responsibilities and basis of report** As the charity trustees of the Trust you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’). I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act. ## **Independent examiner’s statement** I have completed my examination. I 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: 1. accounting records were not kept in respect of the Trust as required by section 130 of the 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. Signed: _________________________ David Wilkinson FCMA CGMA Weaver-AFS Ltd Associates House 118a East Barnet Road New Barnet Hertfordshire EN4 8RE Date: Page 4 of 6 **THE CJD SUPPORT NETWORK STATEMENT OF FINANCIAL ACTIVITY INCOME & EXPENDITURE ACCOUNT FOR YEAR END 31ST MARCH 2022** **----- Start of picture text -----**
2022 2021
Unrestricted Restricted Unrestricted Restricted
Funds Funds Funds Funds
£ £ £ £
Income
Member Subscriptions 120 0
Fundraising Item Sale 271 0
Gift Aid Reclaim 2,215 7,493
Gifts & Donations 11,106 7,239
Give As You Earn 791 264
In Memoriam 17,058 41,340
Interest Income 18 41
Raffle income 1,308 0
Dinner FSM 120 0
Sponsored Fundraising Events 2,262 852
TOTAL INCOME 35,269 0 57,230 0
Expenditure
Accountancy 336 240
Caring Grants 2,780 1,300
Family Support Meeting 3,165 0
Fundraising Expenses 1,706 36
Insurance 754 700
Membership Fees 0 324
Mobile Phone/Internet 683 586
National Co-ordinator 0 11,460
New Website costs 0 43
Office Supplies 1,493 106
Postage & Delivery 11 526
Raffle expenses 142 0
Research Grant 24,990 10
Salaries and employers nic 7,078 0
Software 533 815
Telephone 185 576
Travel/Committee 214 0
Website maintenance 0 850
TOTAL EXPENDITURE 44,070 0 17,570 0
Excess of expenditure over income (8,801) 0 39,659 0
Balance brought forward 1st April 2021 197,651 1,709 157,992 1,709
BALANCE CARRIED FORWARD
188,850 1,709 197,651 1,709
31ST MARCH 2022
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Page 5 of 6 ## **THE CJD SUPPORT NETWORK** ## **STATEMENT OF ASSETS AND LIABILITIES at 31st March 2022** ||**2022**|**2021**| |---|---|---| ||**£**
**£**|**£**
**£**| |**Current Assets**||| |LloydsTSB Current Account
LloydsTSB Savings Account|4,742
186,015|6,363
192,997| |**Current Liabilities**
Other taxes and social security costs|190,757
(198)|199,360| |**TOTAL ASSETS LESS LIABILITIES**|**190,559**|**199,360**| |**THE FUNDS OF THE CHARITY**
Restricted funds
Unrestricted funds|1,709
188,850|1,709
197,651| |**TOTAL CHARITY FUNDS**|**190,559**|**199,360**| Approved by the Board of Trustees on ___ January 2023 and signed on its behalf Signed by ______________________________ ______________________________ Prof. Richard Knight Andy Tomaso Chairman Treasurer Page 6 of 6