**REGISTERED CHARITY NUMBER: 1083179**
**REPORT OF THE TRUSTEES AND UNAUDITED FINANCIAL STATEMENTS**
**FOR THE YEAR ENDED 31 DECEMBER 2023**
## **FOR**
**DIAMOND BLACKFAN ANAEMIA SYNDROME SUPPORT GROUP UK**
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **CONTENTS OF THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
||**Page**|
|---|---|
|**Message from the Chair, Leisa Batkin**|**1**|
|**Report of the Trustees**|**2 to 6**|
|**Independent Examiner's Report**|**7**|
|**Statement of Financial Activities**|**8**|
|**Balance Sheet**|**9**|
|**Notes to the Financial Statements**|**10 to 13**|
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **MESSAGE FROM THE CHAIR, LEISA BATKIN FOR THE YEAR ENDED 31 DECEMBER 2023**
This is the 12th Chair Report that I have had the honour to present to you. In a cost-of-living crisis times it has been a privilege to support our families and help them to access the right information at the right time with the additional pressures our families are facing.
2023 has been a challenging year with the financial pressures continuing to dominate the landscape. However, after much careful consideration we were so pleased to be able to hold our annual Family Weekend at PGL Centre In May. It was a privilege to catch up with so many of our wonderful families again. We welcomed new families, and it is so important for our families and adults to remain connected. Our family weekends are central to creating lasting relationships within our community.
DBA UK continues to deliver a high quality of care and support to all the members. The committee work tirelessly to raise the funds and support the families and people to fundraise. To allow any of this to happen is time consuming and more and more pressure is placed on these volunteers to perform. It is an increasingly difficult climate for fundraising, and we are constantly challenged to maintain the income required to carry on.
Once again, this charity would not be functioning without the support, dedication, and commitment of its committee and its wonderful volunteers. Without the people stepping forward and giving up their precious time we would not be where we are today.
There is always some exciting opportunity just around every corner and it remains as important to DBA UK now to strive for the magic brought by its members as it did over 20 years ago at the start of the Charity, and we think we have moved rapidly to respond to our family’s needs.
On behalf of DBA UK we wish you a full and healthy year and look forward to supporting our community of wonderful families in 2024.
## **Leisa Batkin**
Chair DBA UK
1
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023**
The trustees present their report with the financial statements of the charity for the year ended 31 December 2023. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).
## **OBJECTIVES AND ACTIVITIES**
## **Objectives and aims**
a) For the relief of sickness of those suffering either directly or indirectly from Diamond Blackfan Anaemia (DBA) and associated conditions.
b) To educate the general public through promotion of research and the dissemination of knowledge about Diamond Blackfan Anaemia (DBA).
2
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023**
## **OBJECTIVES AND ACTIVITIES**
## **Significant activities**
Thankfully, we were able to hold our annual Family Weekend at Caythorpe Court PGL Centre in May. We had over 70 adults and almost 60 children in attendance.
## **Annual Adult Patient Conference**
This year we agreed with our adults that we should merge the adult conference with our Family Weekend at PGL in May. This worked very well in the past couple of years, so much so that this may be a permanent arrangement for future years.
## **Support of DBA Research and improved clinical management techniques**
Although we are a relatively small charity, we support research projects from all around the world, all trying to discover and understand the mechanisms for the occurrence of DBA and to improve the management of the condition.
This year Professor John Strouboulis of King’s College London was successful in applying to us for £30,000 for an exciting 1 year research project on ‘GATA 1 short mutations in DBA’ the mechanisms by which DBA presents itself. We wish him well and look forward to seeing the results from this exciting project in 2024.
The Annual DBAF International Consensus Conference in Atlanta, USA, took place in October after being postponed since 2019. Our Chair Leisa Batkin and Specialist DBA Haematologist Consultant Dr Deena Iskander attended as representatives of DBA UK. This event is a hugely important to our DBA community of families as it brings together DBA specialists, consultants and researchers from all over the world (including the UK) to share knowledge and establish common standards of treatment and management for Diamond Blackfan Anaemia. DBA UK continue to support this event and are happy to be part of our international DBA community.
## **Online support through Social Media via our website**
Support via social media became even more important during the Covid pandemic in 2021 and as things slowly started to return to normal in 2022 and into 2023. DBA UK Facebook pages continue to be an invaluable source of support for all our DBA patients and families. We also have a website which is packed with information relating to DBA. Next year we are planning to rebuild the website, reviewing its content and making more user friendly for mobile phones and tablets. We are also investigating the potential to develop an online app for our families to use. The goal for this is for our families to record test results, plan hospital appointments, have easy access to important information and to manage their child's treatment and care from one central location.
## **Telephone Helpline**
DBA UK continue to provide a telephone helpline for DBA support. However, with the increasing popularity of social media, we receive very few telephone calls. Our focus has therefore switched to online support via our Facebook pages which have proved hugely successful.
## **Information Leaflets**
DBA UK have produced new and much improved information leaflets which we regularly circulate and provide as downloads via our website. This reflects the changing approaches to DBA treatment and management.
3
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023**
## **ACHIEVEMENT AND PERFORMANCE**
We were delighted to be able to organise our Annual Family Weekend at Caythorpe Court PGL centre in Lincolnshire. It was wonderful to see our lovely families and children again as well as welcome five new families into our little community. Everybody had an amazing weekend meeting old friends and new. We had some extremely interesting presentations from our consultants and research partners. We saw record numbers of families attending this year proving that this event is by far the most important event in our calendar.
Throughout the year we also continued with frequent updates via social media platforms, literature and webinars. Our families felt supported and connected. It was really important that we offered guidance that was up to date, relevant and easy to understand. We provided our families with masks, letters for schools, signposted to employment support services and offered a place to discuss issues and difficult decisions.
As things slowly started to return to normal, our committee and trustees have worked tirelessly to support our DBA families and patients. Some of whom have been through or are going through the Bone Marrow Transplant process with their children. This is a hugely stressful and emotional journey and we are very fortunate to have families who can help us share their support and BMT experiences.
## **FINANCIAL REVIEW**
## **Financial Review**
Total annual Income for 2023 **£78,663**
Total Expenditure for 2023 was **£71,268**
Notable expenditure this year included;
• Dr John Strouboulis Research Project £30,000 • Annual DBA UK Family Weekend £25,522 Total Cash Assets at 31 December 2023 **£143,666**
## **Reserves policy**
Our annual Family Weekend remains the core event for our charity. Consequently, the Committee have decided that the charity should hold "3 years costs for Family Weekends" in reserve. Currently each Family Weekend costs the charity approximately £25,000 so we must therefore hold £75,000 in reserve.
## **FUTURE FUNDRAISING OBJECTIVES AND PLANS**
The Committee acknowledge that going forward the charity will have to work harder to secure a good annual income. This may involve exploring other sources of income such as corporate sponsorships and grants. The committee discussed the possibility of seeking external advice on putting together a fundraising strategy for the charity. However, we are aware that putting such a strategy into practice may be challenging given that we rely heavily on such a small group of volunteers. We acknowledge that a great contribution is made by our committee volunteers and we are grateful for the many hours they have spent sharing their skills, knowledge and experience. Without this valuable contribution, we would not have been able to achieve so much this year. However, like most charities, we must actively make provision to recruit new Committee members to support the few we have currently.
## **STRUCTURE, GOVERNANCE AND MANAGEMENT**
## **Governing document**
The charity is controlled by its governing document, a deed of trust and constitutes an unincorporated charity.
4
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023**
## **STRUCTURE, GOVERNANCE AND MANAGEMENT**
## **Recruitment and appointment of new trustees**
Election from members at AGM on 3 Year rotation, 1/3rd resigning in turn each year, who are then eligible for reelection at our AGM usually held at our Family Weekend usually in May.
Trustees give their time voluntarily and generally receive no remuneration or other benefits. However, as a temporary emergency measure, Leisa Batkin, our Chair and Trustee receives a small sum per month to secure time for the vital work she does for the charity. This will be reviewed as and when new Committee members are recruited and the workload is reduced for the few committee members we currently have.
## **Committee Roles and Responsibilities**
Like many other charities, we struggle to find volunteers who are willing to commit their time and skills to our cause. Naturally, this puts even more pressure on our existing volunteers who already work tirelessly to support the charity. We recognise that this situation is not sustainable so next year it is our primary goal to recruit new volunteers onto the Committee. We are truly grateful to the current committee members who work tirelessly for the charity. We continued to fund Leisa Batkin, our most medically qualified and experienced committee member (and Chair), on a 'consultancy basis' for a set number of hours per week. This ensures that Leisa can dedicate her precious time to supporting our volunteer committee until such a time that we could recruit more new members. This temporary arrangement has proved to be a huge success and we are extremely very grateful to Leisa for her continued commitment.
## **Risk management**
The trustees have a duty to identify and review the risks to which the charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.
## **REFERENCE AND ADMINISTRATIVE DETAILS Registered Charity number** 1083179
## **Principal address**
31 Roman Place LEEDS LS8 2DS
## **Trustees**
From 1st January to 31st December (Financial Year)
1. Leisa Batkin. Chair and Trustee 2. Peter Redmond. Treasurer and Trustee 3. Ellie Hudson Secretary and Trustee (appointed as Secretary on 21st May 2023) 4. Joanne Hubbard Fundraising Lead and Trustee 5. Jayson Whittaker Trustee 6. Helen Till Trustee. Resigned as Secretary on 21[st] May 2023. Remained as Trustee to 20[th] June 2024
## **Independent Examiner**
Roseworth Accountancy Ltd. 14 Roseberry Court Stokesley Middlesbrough Nth Yorks TS9 5QT
5
## **PUBLIC BENEFIT**
In line with the Charity Commission's guidance on public benefit, the charity committee regularly reviews its objects and achievements in order to ensure that the guidelines are complied with.
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2023**
Approved by order of the board of trustees on Tuesday 1[st] October 2024 and signed on its behalf by:
Peter Redmond – Treasurer and Trustee
6
## **INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **Independent examiner's report to the trustees of Diamond Blackfan Anaemia Support Group UK**
I report to the charity trustees on my examination of the accounts of Diamond Blackfan Anaemia Support Group UK (the Trust) for the year ended 31 December 2023.
## **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 Section145 of the Act and in carrying out my examination I have followed all 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; or
3. the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination.
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.
Robert J Cooper FMAAT
Roseworth Accountancy Ltd 14 Roseberry Court Stokesley Middlesbrough Nth Yorks TS9 5QT
27[th] September 2024
7
**DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2023**
|Notes
**INCOME AND ENDOWMENTS FROM**
Donations and legacies
Other trading activities
3
Investment income
4
**Total**
**EXPENDITURE ON**
Raising funds
Other
**Total**
**NET INCOME**
**RECONCILIATION OF FUNDS**
Total funds brought forward
**TOTAL FUNDS CARRIED FORWARD**|31.12.23
31.12.22
Unrestricted
fund
Unrestricted
fund
£
£
74,262
57,389
2,906
6,749
**1,495**
271|
|---|---|
||**78,663**
**64,409**|
||830
862
70,438
56,338|
||**71,268**
**57,200**|
||7,395
7,209
**135,431**
**128,22**|
||**142,826**
**135,431**|
8
The notes form part of these financial statements Page 8
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **BALANCE SHEET**
## **31 DECEMBER 2023**
|Notes
**CURRENT ASSETS**
Cash at bank
**CREDITORS**
Amounts falling due within one year
8
**NET CURRENT ASSETS**
**TOTAL ASSETS LESS CURRENT LIABILITIES**
**NET ASSETS**
**FUNDS**
Unrestricted funds
9
**TOTAL FUNDS**|31.12.23
31.12.22
Unrestricted
fund
Unrestricted
fund
£
£
143,666
136,271
(840)
(840)|
|---|---|
||142,826
**135,431**|
||142,826
135,431|
||142,826
135,431|
||142,826
135,431|
||**142,826**
135,431|
The financial statements were approved by the Board of Trustees and authorised for issue on **Tuesday 1[st] October 2024** and were signed on its behalf by:
Peter Redmond – Treasurer and Trustee
Leisa Batkin – Chair and Trustee
Ellie Hudson – Secretary and Trustee
9
The notes form part of these financial statements
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **1. STATUTORY INFORMATION**
Diamond Blackfan Anaemia Support Group is an unincorporated charity, registered in England & Wales. The charity's registered number and principal address can be found in the Report of the Trustees.
## **2. ACCOUNTING POLICIES**
## **Basis of preparing the financial statements**
The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Charities Act 2011. The financial statements have been prepared under the historical cost convention.
In preparing the financial statements, the trustees are required to make an assessment of the ability of the charity to continue as a going concern. The trustees have considered all available evidence for the charity which covers the 12 month period from the date of signing these financial statements. Against the backdrop of the COVID-19 Pandemic the trustees have paid particular attention to likely cashflow requirements and the future availability of adequate cashflow to the charity.
On the basis of this consideration, the trustees are satisfied that the charity has adequate resources to continue in operational existence and to meet its liabilities as they fall due for the foreseeable future. In reaching this conclusion they consider that no material uncertainty exists. As a result, the trustees have concluded that it remains appropriate to adopt a going concern basis of preparation in these financial statements.
## **Income**
All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.
## **Expenditure**
Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources.
## **Taxation**
The charity is exempt from tax on its charitable activities.
## **Fund accounting**
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.
Further explanation of the nature and purpose of each fund is included in the notes to the financial statements
10
Continued …
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **NOTES TO THE FINANCIAL STATEMENTS - FOR THE YEAR ENDED 31 DECEMBER 2023**
|**3. OTHER TRADING ACTIVITIES**
Fundraising events
**4. INVESTMENT INCOME**
Deposit account interest
**5. INDEPENDENT EXAMINERS' REMUNERATION**
Fees payable to the charity’s independent examiners for the
independent examination of the charity’s financial statements||31.12.23
31.12.22
£
£
2,906
6,749|
|---|---|---|
|||31.12.23
31.12.22
£
£
1,495
271|
|||31.12.23
31.12.22
£
£|
|||840
840|
## **6. TRUSTEES' REMUNERATION AND BENEFITS**
During the year Trustee; L Batkin was remunerated for consultancy services totalling £3,000 (2022: £5,000). This is permitted in accordance with a resolution dated 9 July 2019 updating the Trustee Benefit Clause in the Charity's Governing Document which was approved by the Charity Commission.
## **Trustees' expenses**
Expenses totalling £1,312 (2022: £527) were paid to one or more Trustees during the year in relation to expenses.
## **7. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES**
|**INCOME AND ENDOWMENTS FROM**
Donations and legacies 2022
Other trading activities 2022
Investment income 2022
**Total**
**Total EXPENDITURE ON**
Raising funds 2022
Other 2022
**Total**
**NET INCOME**|Unrestricted
Fund
£
57,389
6,749
271
**64,409**
862
56,338
**57,200**
**7,209**|
|---|---|
**RECONCILIATION OF FUNDS** Total funds brought forward
128,222
11
Continued …
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **NOTES TO THE FINANCIAL STATEMENTS – FOR THE YEAR ENDED 31 DECEMBER 2023**
## **7. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES - continued**
|**TOTAL FUNDS CARRIED FORWARD**
**8. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**
31.12.23
£
Other creditors
840
**9. MOVEMENT IN FUNDS**
At 1.1.23
Net
movement in
funds
**Unrestricted funds**
General fund
135,431
7,395
**TOTAL FUNDS**
**135,341**
**7,395**
Net movement in funds, included in the above are as follows:
Incoming
Resources
Resources
expended
£
£
**Unrestricted funds**
General fund
78,663
(71,268)
**TOTAL FUNDS**
**78,663**
**(71,268)**
**Comparatives for movement in funds**
At 1.1.22
Net
movement in
funds
£
£
**Unrestricted funds**
General fund
128,222
7,209
**TOTAL FUNDS**
**128,222**
**7,209**|**TOTAL FUNDS CARRIED FORWARD**
**8. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**
31.12.23
£
Other creditors
840
**9. MOVEMENT IN FUNDS**
At 1.1.23
Net
movement in
funds
**Unrestricted funds**
General fund
135,431
7,395
**TOTAL FUNDS**
**135,341**
**7,395**
Net movement in funds, included in the above are as follows:
Incoming
Resources
Resources
expended
£
£
**Unrestricted funds**
General fund
78,663
(71,268)
**TOTAL FUNDS**
**78,663**
**(71,268)**
**Comparatives for movement in funds**
At 1.1.22
Net
movement in
funds
£
£
**Unrestricted funds**
General fund
128,222
7,209
**TOTAL FUNDS**
**128,222**
**7,209**|Unrestricted
Fund
£|
|---|---|---|
|||**135,431**|
|||31.12.22
£
840
At 31.12.23
142,826|
||**135,341**
**7,395**|**142,826**|
||Incoming
Resources
Resources
expended
£
£
78,663
(71,268)|Movement in
Funds
£
7,395|
||**78,663**
**(71,268)**|**7,395**|
||At 1.1.22
Net
movement in
funds
£
£
128,222
7,209|At 31.12.22
£
135,431|
||**128,222**
**7,209**|**135,431**|
12
Continued …
## **DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK**
## **NOTES TO THE FINANCIAL STATEMENTS - FOR THE YEAR ENDED 31 DECEMBER 2023**
## **9. MOVEMENT IN FUNDS - continued**
Comparative net movement in funds, included in the above are as follows:
||Incoming|Resources|Movement in|
|---|---|---|---|
||Resources|expended|Funds|
||£|£|£|
|**Unrestricted funds**||||
|General fund|64,409|(57,200)|7,209|
|**TOTAL FUNDS**|**64,409**|**(57,200)**|**7,209**|
|A current year 12 months and prior year 12 months combined position is as follows:||||
|||Net||
|**Comparatives for movement in funds**||movement in||
||At 1.1.22|funds|At 31.12.23|
||£|£|£|
|**Unrestricted funds**||||
|General fund|128,222|14,604|142,826|
|**TOTAL FUNDS**|**128,222**|**14,604**|**142,826**|
|A current year 12 months and prior year 12 months combined net movement in||||
|funds, included in the above are as follows:||||
||Incoming|Resources|Movement in|
||Resources|expended|Funds|
||£|£|£|
|**Unrestricted funds**||||
|General fund|143,072|(128,468)|14,604|
|**TOTAL FUNDS**|**143,072**|**(128,468)**|**14,604**|
## **10. RELATED PARTY DISCLOSURES**
Transactions with Trustees during the year are summarised in note 6.
13