## THE CJD SUPPORT NETWORK ANNUAL REPORT AND ACCOUNTS FOR THE YEAR ENDED 31[st] MARCH 2021 Associates House 118a East Barnet Road New Barnet Hertfordshire EN4 8RE ## TRUSTEES Prof. Richard Knight (Chairman) Andrea 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 2021** The Trustees are pleased to present their report together with the financial statement of the charity for the year ended 31st March 2021. 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 In the period of this report we have responded to numerous helpline calls and agreed 3 care grants to families in need through caring for a loved one with all forms of CJD. In September 2020, our National Co-ordinator, Gill Turner, announced her retirement. Gill was involved in the CJD Support Network since its inception, and her dedication and professionalism has helped the Network grow into the position we are in today. We thank and acknowledge the excellent service she has given us, and are well aware of the help she has personally given families over the years, testament to this being the numerous messages of thanks and best wishes conveyed to Gill directly from family members who have benefitted from Gill's knowledge, experience and compassion. Whilst we undertook a search for Gill's replacement, the helpline and support service we provide continued thanks to the commitment of our committee members on a Due to the Covid-19 pandemic, we were unable to host our annual family support day in November 2020. This was a great disappointment as historically, these days provided a great deal of support to families and loved ones. It was therefore decided to that we would instead host a series of online support events as follows: Page 2 of 6 - 9th September 2020, 'The Diagnostic Process' (led by Prof. Richard Knight) - 10th October 2020, 'Talking About Grief and Loss' (led by Dr Kirsten Moore and Jill Walton) - 11th November 2020, 'Genetic Forms of CJD and Risk in Families (led by Prof. Simon Mead) During each event, an expert speaker gave a presentation before leading a Q&A session during which attendees could ask questions themselves, or submit them anonymously via a chat 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 ## FINANCIAL REVIEW Despite the Covid-19 pandemic, we are pleased to report that it has been another positive year for the Network. Whilst our income from sponsored fundraising events understandably diminished during the pandemic due to government imposed restrictions, we continued to receive great support from many individuals. Our main source of income during this financial year came from In Memoriam donations totalling amazing £41,430. General donations totalled £7,239 and we were grateful to also receive £7,493 via Gift Aid reclaim. Our total income totalled £57,230 which was up on the £44,252 from the year Our expenditure for the year was £17,570 which allowed us to enjoy a very healthy surplus for the year of £39,659. 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 2021. ## **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; 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 ASSETS AND LIABILITIES at 31st March 2021** **----- Start of picture text -----**
2021 2020
£ £ £ £
Current Assets
LloydsTSB Current Account 6,363 5,745
LloydsTSB Savings Account 192,997 153,956
TOTAL ASSETS LESS LIABILITIES 199,360 159,701
THE FUNDS OF THE CHARITY
Restricted funds 1,709 1,709
Unrestricted funds 197,651 157,992
TOTAL CHARITY FUNDS 199,360 159,701
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Approved by the Board of Trustees on ___ October 2021 and signed on its behalf **----- Start of picture text -----**
Signed by
______________________________ ______________________________
Prof. Richard Knight Andy Tomaso
Chairman Treasurer
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Page 5 of 6 **THE CJD SUPPORT NETWORK STATEMENT OF FINANCIAL ACTIVITY INCOME & EXPENDITURE ACCOUNT FOR YEAR END 31ST MARCH 2021** **----- Start of picture text -----**
2021 2020
Unrestricted Restricted Unrestricted Restricted
Funds Funds Funds Funds
£ £ £ £
Income
Pen sales 0 0
Gift Aid Reclaim 7,493 1,562
Gifts & Donations 7,239 8,468
Give As You Earn 264 386
In Memoriam 41,340 0 8,303 1,709
Interest Income 41 80
Raffle income 0 2,035
Dinner FSM 0 340
Sponsored Fundraising Events 852 23,078
TOTAL INCOME 57,230 0 44,252 1,709
Expenditure
Bookkeeping 240 240
Caring Grants 1,300 925
Committee Meetings 0 78
Energy Cost Contribution 0 0
Family Support Meeting 0 4,859
Fundraising Expenses 36 147
Insurance 700 681
Membership Fees 324 562
Microsoft software for computer 0 96
Mobile Phone/Internet 586 1,024
National Co-ordinator 11,460 18,492
New Website costs 43 0
Newsletter Printing 0 776
Office Supplies 106 189
Postage & Delivery 526 664
Research Grant 10 12,213 10,072
Promotional Material 0 0
Software 815 477
Stationery 0 103
Telephone 576 597
Training & Development 0 0
Travel/Committee 0 1,455
Travel/Co-Ordinator 0 799
Website maintenance 850 850
TOTAL EXPENDITURE 17,570 0 45,227 10,072
Excess of expenditure over income 39,659 0 (975) -8,363
Balance brought forward 1st April 2020 157,992 1,709 158,967 10,072
BALANCE CARRIED FORWARD 31ST
197,651 1,709 157,992 1,709
MARCH 2020
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