THE CJD SUPPORT NETWORK ANNUAL REPORT AND ACCOUNTS
FOR THE YEAR ENDED 31[st] MARCH 2025 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
Not Just Numbers Ltd 5 Carrwood Park Selby Road Leeds West Yorkshire LS15 4LG
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THE CJD SUPPORT NETWORK
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 31st MARCH 2025
The Trustees are pleased to present their report together with the financial statement of the charity for the year ended 31st March 2025.
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 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 almost 30 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 eight 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 2024 in Chester. 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.
FINANCIAL REVIEW
We were the generous recipients of many donations throughout 2024-25, with major contributions from general Gifts and Donations totalling over £172,000 and In Memoriam donations totalling just under £56,000. Our overall income for year ending March 2024 was just over £260,000. Our expenditure for the year was £38,640. As a result, we showed a financial surplus for year ending March 2024 of just over £214,000.
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.
RSG KNIGHT
Signed on 29 January 2026 @ 10:58
Prof. Richard Knight Chairman
Signed:
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THE CJD SUPPORT NETWORK – CHARITY NO 1097173 INDEPENDENT EXAMINER’S REPORT FOR THE YEAR ENDED 31[ST] MARCH 2025
Independent Examiner’s Report
Responsibilities and basis of report
I report to the trustees on my examination of the accounts of the CJD Support Network charity (“the Trust”) for the year ended 31[st] March 2025.
As the charity's trustees, 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
The charity’s gross income exceeded £250,000 and I am qualified to undertake the examination by being a qualified member of The Chartered Institute of Management Accountants .
I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:
the accounting records were not kept in accordance with section 130 of the Charities Act; or
- the accounts did not accord with the accounting 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 to enable a proper understanding of the accounts to be reached.
Signed
D A Whitaker
Signed on 28 January 2026 @ 21:58
Deborah Whitaker ACMA CGMA Not Just Numbers Ltd 5 Carrwood Park Selby Road Leeds West Yorkshire LS15 4LG
Date:
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THE CJD SUPPORT NETWORK STATEMENT OF FINANCIAL ACTIVITY INCOME & EXPENDITURE ACCOUNT FOR YEAR END 31ST MARCH 2025
==> picture [490 x 608] intentionally omitted <==
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2025 2024
Unrestricted Restricted Funds Unrestricted Restricted Funds
Funds Funds
£ £ £ £
Income
Member Subscriptions 145 130
Fundraising Item Sale 13 1,028
Gift Aid Reclaim 9,576 6,650
Gifts & Donations 172,159 21,104
Give As You Earn 470 803
In Memoriam 56,404 57,960
Interest Income 4,136 2,300
Merchandise 1,112 0
Research donation 380 0
In memoriam (Retricted for reasearch) 0 300 0
Raffle income 0 1,157
Dinner FSM 0 260
Sundry incom 0 220
Sponsored Fundraising Events 15,847 9,441
TOTAL INCOME 260,241 300 101,052 0
Expenditure
Accountancy 648 672
Caring Grants 2,159 3,635
Family Support Meeting 7,087 5,529
Fundraising Expenses 2,481 2,342
Gifts 135 0
Insurance 929 902
Legal & Professional 0 295
Membership Fees -10 668
Mobile Phone/Internet 229 180
New Website costs 0 46
Office Supplies 30 12
Postage & Delivery 694 600
Printing 189 0
Prion Conference 750 259
Promotional Material 215 0
Raffle expenses 120 76
Research Grant 0 48,500
Salaries employers nic and employers pension 19,109 17,094
Software 810 597
Telephone 549 390
Travel/Committee 398 564
Travel/Co-ordinator 1,241 766
Website maintenance 878 600
TOTAL EXPENDITURE 38,640 0 83,728 0
Excess of expenditure over income 221,601 300 17,325 0
Balance brought forward 1st April 2024 232,484 1,709 215,159 1,709
BALANCE CARRIED FORWARD 31ST
454,085 2,009 232,484 1,709
MARCH 2025
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THE CJD SUPPORT NETWORK
STATEMENT OF ASSETS AND LIABILITIES at 31st March 2025
| 2024 | 2024 | |||
|---|---|---|---|---|
| £ | £ | £ | £ | |
| Current Assets | ||||
| Other debtor | 0 | 0 | ||
| LloydsTSB Current Account LloydsTSB Savings Account |
13,198 443,140 |
21,318 213,004 |
||
| Current Liabilities Other taxes and social security costs |
456,338 (244) |
234,322 (129) |
||
| TOTAL ASSETS LESS LIABILITIES | 456,094 | 234,193 | ||
| THE FUNDS OF THE CHARITY Restricted funds Unrestricted funds |
2,009 454,085 |
1,709 232,484 |
||
| TOTAL CHARITY FUNDS | 456,094 | 234,193 |
Approved by the Board of Trustees on ___ January 2025 and signed on its behalf
Signed by
RSG KNIGHT Signed on 29 January 2026 @ 10:58
A Tomaso Signed on 29 January 2026 @ 06:03
Prof. Richard Knight Chairman
Andy Tomaso Treasurer
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