THE CJD SUPPORT NETWORK ANNUAL REPORT AND ACCOUNTS FOR THE YEAR ENDED 31[st] MARCH 2024 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 31[st] MARCH 2024 The Trustees are pleased to present their report together with the financial statement of the charity for the year ended 31[st] March 2024. 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 25 years. Beth Marsh has continued in her role as our National Co-ordinator and continues to bring great passion, enthusiasm and skill to the role. In the period of this report we have responded to numerous helpline calls and agreed 8 care grants to families in need through caring for a loved one with all forms of CJD. We once again hosted our Family Support Day in September 2023 in Oxford. 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 2023-24, with major contributions from general Gifts and Donations totalling over £21,000 and In Memoriam donations totalling just under £58,000. Our overall income for year ending March 2024 was just over £101,000. This included approximately £1150 raised from our annual fundraising raffle. Our expenditure for the year was £83,728. Research grants totalling £48,500 were awarded in the year. Other expenditure was broadly in keeping with previous years. As a result, we showed a financial surplus for year ending March 2024 of just over £17,000. 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: RSG KNIGHT Page 3 of 6 THE CJD SUPPORT NETWORK INDEPENDENT EXAMINER’S REPORT FOR THE YEAR ENDED 31[st] MARCH 2024 ## **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 2024.. ## **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: 20 January 2025 Page 4 of 6 ## **THE CJD SUPPORT NETWORK STATEMENT OF FINANCIAL ACTIVITY INCOME & EXPENDITURE ACCOUNT FOR YEAR END 31ST MARCH 2024** |**Unrestricted**
**Funds**
**Restricted**
**Funds**
**£**
**£**
Income
Member Subscriptions
130
Fundraising Item Sale
1,028
Gift Aid Reclaim
6,650
Gifts & Donations
21,104
Give As You Earn
803
In Memoriam
57,960
Interest Income
2,300
Raffle income
1,157
Dinner FSM
260
Sundry incom
220
Sponsored FundraisingEvents
9,441
**TOTAL INCOME**
**101,052**
**0**
Expenditure
Accountancy
672
Caring Grants
3,635
Family Support Meeting
5,529
Fundraising Expenses
2,342
Insurance
902
Legal & Professional
295
Membership Fees
668
Mobile Phone/Internet
180
National Co-ordinator
0
New Website costs
46
Office Supplies
12
Postage & Delivery
600
Prion Conference
259
Raffle expenses
76
Research Grant
48,500
Salaries and employers nic
17,094
Software
597
Telephone
390
Travel/Committee
564
Travel/Co-ordinator
766
Website maintenance
600
**TOTAL EXPENDITURE**
**83,728**
**0**
Excess of expenditure over income
17,325
0
Balance brought forward 1st April 2023
215,159
1,709
**BALANCE CARRIED FORWARD 31ST**
**MARCH 2024**
**232,484**
**1,709**
**2024**|**Unrestricted**
**Funds**
**Restricted**
**Funds**
**£**
**£**
Income
Member Subscriptions
130
Fundraising Item Sale
1,028
Gift Aid Reclaim
6,650
Gifts & Donations
21,104
Give As You Earn
803
In Memoriam
57,960
Interest Income
2,300
Raffle income
1,157
Dinner FSM
260
Sundry incom
220
Sponsored FundraisingEvents
9,441
**TOTAL INCOME**
**101,052**
**0**
Expenditure
Accountancy
672
Caring Grants
3,635
Family Support Meeting
5,529
Fundraising Expenses
2,342
Insurance
902
Legal & Professional
295
Membership Fees
668
Mobile Phone/Internet
180
National Co-ordinator
0
New Website costs
46
Office Supplies
12
Postage & Delivery
600
Prion Conference
259
Raffle expenses
76
Research Grant
48,500
Salaries and employers nic
17,094
Software
597
Telephone
390
Travel/Committee
564
Travel/Co-ordinator
766
Website maintenance
600
**TOTAL EXPENDITURE**
**83,728**
**0**
Excess of expenditure over income
17,325
0
Balance brought forward 1st April 2023
215,159
1,709
**BALANCE CARRIED FORWARD 31ST**
**MARCH 2024**
**232,484**
**1,709**
**2024**|**Unrestricted**
**Funds**
**Restricted**
**Funds**
**£**
**£**
Income
Member Subscriptions
130
Fundraising Item Sale
1,028
Gift Aid Reclaim
6,650
Gifts & Donations
21,104
Give As You Earn
803
In Memoriam
57,960
Interest Income
2,300
Raffle income
1,157
Dinner FSM
260
Sundry incom
220
Sponsored FundraisingEvents
9,441
**TOTAL INCOME**
**101,052**
**0**
Expenditure
Accountancy
672
Caring Grants
3,635
Family Support Meeting
5,529
Fundraising Expenses
2,342
Insurance
902
Legal & Professional
295
Membership Fees
668
Mobile Phone/Internet
180
National Co-ordinator
0
New Website costs
46
Office Supplies
12
Postage & Delivery
600
Prion Conference
259
Raffle expenses
76
Research Grant
48,500
Salaries and employers nic
17,094
Software
597
Telephone
390
Travel/Committee
564
Travel/Co-ordinator
766
Website maintenance
600
**TOTAL EXPENDITURE**
**83,728**
**0**
Excess of expenditure over income
17,325
0
Balance brought forward 1st April 2023
215,159
1,709
**BALANCE CARRIED FORWARD 31ST**
**MARCH 2024**
**232,484**
**1,709**
**2024**|**Unrestricted**
**Funds**
**Restricted**
**Funds**
**£**
**£**
Income
Member Subscriptions
130
Fundraising Item Sale
1,028
Gift Aid Reclaim
6,650
Gifts & Donations
21,104
Give As You Earn
803
In Memoriam
57,960
Interest Income
2,300
Raffle income
1,157
Dinner FSM
260
Sundry incom
220
Sponsored FundraisingEvents
9,441
**TOTAL INCOME**
**101,052**
**0**
Expenditure
Accountancy
672
Caring Grants
3,635
Family Support Meeting
5,529
Fundraising Expenses
2,342
Insurance
902
Legal & Professional
295
Membership Fees
668
Mobile Phone/Internet
180
National Co-ordinator
0
New Website costs
46
Office Supplies
12
Postage & Delivery
600
Prion Conference
259
Raffle expenses
76
Research Grant
48,500
Salaries and employers nic
17,094
Software
597
Telephone
390
Travel/Committee
564
Travel/Co-ordinator
766
Website maintenance
600
**TOTAL EXPENDITURE**
**83,728**
**0**
Excess of expenditure over income
17,325
0
Balance brought forward 1st April 2023
215,159
1,709
**BALANCE CARRIED FORWARD 31ST**
**MARCH 2024**
**232,484**
**1,709**
**2024**|**2023**|**2023**| |---|---|---|---|---|---| ||**Unrestricted**
**Funds**
**£**
me
Member Subscriptions
130
Fundraising Item Sale
1,028
Gift Aid Reclaim
6,650
Gifts & Donations
21,104
Give As You Earn
803
In Memoriam
57,960
Interest Income
2,300
Raffle income
1,157
Dinner FSM
260
Sundry incom
220
Sponsored FundraisingEvents
9,441||**Restricted**
**Funds**
**£**










|**Unrestricted**
**Funds**
**£**
130
422
3,452
16,464
122
29,931
379
454
640
0
9,305|**Restricted**
**Funds**
**£**










| ||**TOTAL INCOME**
**101,052**||
**0**|
**61,299**|
**0**| ||enditure
Accountancy
672
Caring Grants
3,635
Family Support Meeting
5,529
Fundraising Expenses
2,342
Insurance
902
Legal & Professional
295
Membership Fees
668
Mobile Phone/Internet
180
National Co-ordinator
0
New Website costs
46
Office Supplies
12
Postage & Delivery
600
Prion Conference
259
Raffle expenses
76
Research Grant
48,500
Salaries and employers nic
17,094
Software
597
Telephone
390
Travel/Committee
564
Travel/Co-ordinator
766
Website maintenance
600||



















|528
1,395
5,250
2,346
836
0
713
367
0
3,860
120
419
657
164
0
17,003
514
149
494
147
27|



















| ||**TOTAL EXPENDITURE**
**83,728**||
**0**|
**34,990**|
**0**| ||||||| ||Excess of expenditure over income
17,325||
0|
26,309|
0| ||||||| ||Balance brought forward 1st April 2023
215,159||
1,709|
188,850|
1,709| ||||||| ||**BALANCE CARRIED FORWARD 31ST**
**MARCH 2024**|**232,484**|
**1,709**|
**215,159**|
**1,709**| Page 5 of 6 **THE CJD SUPPORT NETWORK** ## **STATEMENT OF ASSETS AND LIABILITIES at 31st March 2024** ||**2024**||**2023**|| |---|---|---|---|---| ||**£**|**£**|**£**|**£**| |**Current Assets**||||| |Other debtor|0||162|| |LloydsTSB Current Account|21,318||6,312|| |LloydsTSB Savings Account|213,004||210,394|| |||234,322||216,868| |**Current Liabilities**||||| |Other taxes and social security costs||(129)||0| |**TOTAL ASSETS LESS LIABILITIES**||**234,193**||**216,868**| |**THE FUNDS OF THE CHARITY**||||| |Restricted funds|1,709||1,709|| |Unrestricted funds|232,484||215,159|| |**TOTAL CHARITY FUNDS**||**234,193**||**216,868**| Approved by the Board of Trustees on ___ January 2024 and signed on its behalf15th Signed by ______________________________ ______________________________ Prof. Richard Knight Andy Tomaso Chairman Treasurer RSG KNIGHT Page 6 of 6