REGIsfERED CHARrrY NUMBER: 1083179 REPORT OF THE TRusfEES AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024 FOR DIAMOND BLACKFAN ANAEMIA SYNDROME SUPPORT GROUP UK
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK CONTENTS OF THE FINANCIAL sfATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024 Page Message from the Chair, Leisa Batkin Report of the Trustees 2to6 Independent Examiner's Report ststement of Financial Activities Balance Sheet Notes to the Financial Statements ioto13
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK MESSAGE FROM THE CHAI LEISA BATKIN FOR THE YEAR ENDED 31 DECEMBER 2024 As Chair of DBAS UK, it is my privilege to present this, my 13th Annual Report, reflecting on our activities, achievements, and challenges over the past year. DBAS UK remains dedicated to supporting individuals and families affected by Diamond Blackfan Anaemia Syndrome, a rare genetic disorder. Our mission is to provide support, fund research, and foster a sense of community among those impacted by DBAS. This year, we have continued to strengthen our support neork, bringing together families and individuals affected by DBAS. Our annual conference was a significant success, providing a platform for patients, families, and medical professionals to share experiences. access the latest medical information, and offer mutual support. The conference also featured workshops and sessions led by experts in the field, enhancing our community's knowledge and resilience. DBAS UK has been at the forefront of funding innovative research projects aimed at improving treatments and finding a cure for DBAS. We have successfully supported a UK patient registry. which serves as a central resource for doctors and researchers. This registry is crucial for documenting each case, facilitating better care, and opening new avenues for research. Additionally. we have made significant progress in developing a patient friendly Standard of Care document for both children and adults to ensure consistent and high-quality treatment for all DBAS patients nationwide. Our fundraising efforts have been instrumental in supporting our initiatives. We are grateful for the generosity of our supporters. whose contributions have enabled us to fund vital research projects and provide essential resources to families. In the coming year, we will continue to strengthen our research collaborations, both nationally and internationally. By partnering with leading research institutions and medical professionals, we aim to accelerate the development of new treatments and move closer to finding optimal treatment choices for DBAS. Our focus on community outreach and education will remain a priority. We will work to increase awareness of DBAS, promote early diagnosis, and advocate for better healthcare policies. Through workshops, informational sessions, and communtty events, we will continue to build a strong. informed, and supportive DBAS community. l am so proud of the progress we have made this year and the resilience of our community. The achievements of DBAS UK are a testament to the dedication and hard work of our volunteers. supporters, and partners. As we look to the future. we remain committed to our mission of providing support. funding research. and fostering a sense of community among those affected by Diamond Blackfan Anaemia Syndrome. on again, this charity could not function without the support, dedication, and commitment of its committee and its wonderful volunteers. Without these people stepping fOard and giving up their precious time we would not be where we are today. Thank you for your continued support. Leisa Batkin Chair and Trustee DBA UK
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK REPORT OF THE TRusfEES FOR THE YEAR ENDED 31 DECEMBER 2024 The tW5tees present their report with the financial statements of the charity for the year ended 31 December 2024. The trustees have adopted the provisions of Accountlng and Reporting by Charities: Statement of Recommended Practi applicable to charities preparing thelr accounts in accordance with the Financial Reporting Stsndard applicable in the UK and Republic of Ireland (FRS 102) (effettlve l January 2019). OBJEcfivES AND AcrIvrrIES Objectives and aims a) For the relief of Sickness of those suffering eÉther directly or indirettly from Diamond Blackfan Anaemia Syndrome (DBAS) and associated conditions. b) To educate the general public through promotion of research and the dissemination of knowledge about Diamond Blackfan Anaemia Syndrome (DBAS).
DIAMOND BiACKFAN ANAEMIA SUPPORT GROUP UK REPORT OF THE TRusfEES FOR THE YEAR ENDED 31 DECEMBER 2024 OBJEcfIvES AND AcfIviTIES Significant activities In May we held our annual Family Weekend at PGL Caythorpe Court in Lincolnshire. As always, it wa5 wonderful to see many of our regular families again, as well as welcoming several new families into our amazing support network. The weekend provide5 a safe Spa where parents and adults can share experiences and knowledge, listen to a wide range of professiona15 and consuitants giving amazing presentstions and talks. Ail this happens while the children are taken away, enjoying themselves on high wires, ziplines climbing walls. This year we had over seventy adults and 60 children attend. The weekend is always the highlight of our calendar. DBSA UK cover all costs for the weekend at no cost at all to our families. Annual Adult Patient Conferen In previous years, each year we held a separate Conferen for our small number of adult DBAS patients at a different time and location. However, in the past couple of years we have merged this event into our regular Family Weekend in May. This has proved very popular for l)oth our adults and other parents. As a result, we have decided to continue with this arrangement as a regular plan. 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 Occurren of DBA and to improve the management of the condition. This year, we have collaborated with the DBAF Foundation in the USA on two projetts relating to research for the mechanisms, causes and treatment of DBAS. In January 2024 DBAS UK contributed $15,000 USD (£12,097) towards a Research Project Competition organi5ed and managed by the DBAF Foundation USA. The competition is open to researchers and scientists from all over the world, submitting applications for DBAS specific research projects. DBAS UK are proud to support this amazing initiative. In March, again DBAS UK were happy to support a joint funding Ventu with DBAF Foundation USA to fund a researcher for one year under the guidance of Dr Deena 15kander at Imperial College London. DBAF USA contributed $40,000 USD (£35,160) and we, DBAS UK contributsd £30,000 to provide the requested £65,160 to fund the project. The Global Bridges DBAS conferen was held in Madrid in May. This is an amazing conference, bringing together specialists, clinicians, consultants and researchers in DBAS from almost all European countries. Leisa Batkin, our charity Chair attended and returned filled with hope that so many wonderfully clever people are focussed on finding the mechanisms, causes and treatments for such are a rare condition a5 DBAS. DBAS UK were happy to contribute 6,000 Euros (£5,280) towards the huge cost of organising and h05ting the weekend conference. Online support through social media via our website Our Facebook pages and Instagram reels continue to be an invaluable source of infomation, support and Inspiration for all our DBAS patients and families. We also have a website which is packed with information relating to DBAS. This year our website ha5 had a complete makeover. It previously felt and looked a litue outdated. We reviewed all content and are now happy that iys look and feel is modern and user friendly. Additionally, we ensured that it is fully fijnctional on mobile devlces like phones and tablets. Telephone Helpline DBAS UK contlnue to provide a telephone helpline for DBAS support. However, with the increasing popularity of soclal media, we receive very few telephone calls. Our focus has therefore switched to online supwrt via our Facebook pages which have proved hugely sucSSfUl.
Information Leaflets DBAS UK have produced new and much improved infomiation leaflets which we gUlarlY circulate and provide as download5 via our website. This reflects the changing approache5 to DBAS treatrnent and management. DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK REPORT OF THE TRUSTEES FOR THE YEAR ENDED 31 DECEMBER 2024 ACHIEVEMENT AND PERFORMANCE We were delighted to be able to organise our Annual Family Weekend at Caythorpe Court PGL ntre 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 intsresting presentations from our consultants and research partners. We saw record numbers of families attending thi5 year proving that this event is by far the most important event in our calendar. Throughout the year we also continued wf(h frequent updates via social medla platfoms, literature and webinars. Our families have felt supported and connected. It was really important that we offered guidance that was up to date, relevant and easy to understand. 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 experience5. FINANCIAL REVIEW Financial Review Totsl annual Income for 2024 £70,635 Total Expenditure for 2024 was £86,584 Notsble expenditure thls year included; Shared Grant with DBAF USA for CollaLK)ration Research Competition £12,097 Shared Grant with DBAF USA for Dr Deena Iskander Research Projett £30,000 Annual DBA UK Family Weekend £24,069 Global Bridges Event contribution (6,000 Euros) £ 5,280 Totsl Cash As*ts at 31 December 2024 £127,717 Reserves policy Our annual Famlly Weekend remalns the core event for our charty. 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 OBJEcfIvES AND PLANS The Committee acknowledge that golng forward the charity will have to work harder to secure a good annual income. This may involve explorlng other sources of income such as corpordte sponsorships and grants. The committee discussed the possibility of seeking external advi 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 STnall 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 experien. Without this valuable contribution, we would not have been able to achieve so much thi5 year. However, Ilke most charities, we must actlvely make provision to recruit new Committee members to support the few we have currently.
srRucfuRE, GOVERNANCE AND MANAGEMENT Governing document The charty is controlled by its governing document, a deed of trust and constitutes an unincorporated charity. DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK REPORT OF THE TRusfEES FOR THE YEAR ENDED 31 DECEMBER 2024 srRUCTURE, GOVERNANCE AND MANAGEMENT Recruitment and appointment of new trustees Election from member5 at AGM on 3 Year rotatlon, 113rd resigning in turn each year, who are then eligible for re- election 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 reiVeS a small sum per month to secure time for the vitsl work she does for the charity- This will be reviewed as and when new Committee members are recruited and the wOroad 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. Naturallyi 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 fijnd Leisa Batkin, our most medically qualified and experienced committee member (and Chair), on a 'consultsncy 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 SUC55 and we are extremely very gratsful to Leisa for her continued commitment. Risk management The trustees have a duty to identify and review the risks to whlch the charity is exposed and to ensure appropriate controls are in pla to provide reasonable assuran against fraud and error. REFERENCE AND ADMINIsfRATIVE DETAILS Registered Charity number 1083179 Principal address 31 Roman Place LEEDS LS8 2DS Trustees From 1st january to 31st Dernber (Flnancial Year) Leisa Batkin. Peter Redmond. Ellie Hudson Joanne Hubbard Jayson Whittaker Helen Till Chair and Trustee Treasurer and Trustee Secretary and Trustee (appolnted as Secretary on 21st May 2024) Fundraising Lead and Trustee Trustee Trustee. Resigned as Trust to 20th June 2024
Independent Examiner for 2024 Wasley Chapman LLP 5 Bobbles Bank Whltby North Yorkshire Y021 IEF Tel. 01947 605921 Contatt: Ross Meadows PUBLIC BENEFrr In line with the Charty Commission's guidance on public benefit, the charty committee regularly reviews its objetts and achievements in order to ensure that the guidelines are complied with. DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK REPORT OF THE TRusfEES FOR THE YEAR ENDED 31 DECEMBER 2024 Approved by order of the board of trustees on 16th Ottober 2025 and signed on its behalf by: Peter Redmond - Treasurer and Trustee
INDEPENDENT EXAMINER'S REPORT TO THE TRusfEES OF DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK Independent examIneS report to the trustees of Diamond Blackfan Anaemia Support Group UK I report to the charity trustees on my examlnatlon of the accounts of Diamond Blackfan Anaemia Support Group UK (the Trust) for the year ended 31 December 2024. Responsibilities and basis of report s the charity trustees of the Trust you are responsible for the preparation of the accounts in accordan with the requirements of the Charities Act 2011 ('the ACV). I report in respett of my examination of the TrusV5 accounts carried out under Section145 of the Att and in carrying out my examination I have followed all applicable Direttions 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 connettion wlth the examination giving me cause to believe that in any material respect: l. accounting records were not kept in respect of the Trust a5 requi by Scrtion 130 of the Att; 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 tnje and falr vlew which is not a matter considered as part of an independent examination. I have no concern5 and have come across no other matters in connettion 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. Ross Meadows Wasley Chapman LLP 5 Bobbles Bank Whitby North Yorkshl Y021 IEF Tel. 01947 605921 16th Ottober 2025
DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK srATEMENT OF FINANCIAL AcrivrrIES FOR THE YEAR ENDED 31 DECEMBER 2024 31.12.24 Unrestricted fund 31.12.23 Unrestricted fund Notes INCOME AND ENDOWMEMfs FROM Donations and legacies 68,415 74,262 Other trading artivities Investment income 519 1,701 2,906 1,495 Total 70,635 78,663 EXPENDITURE ON Raising funds 840 830 Other 85,744 70,438 Total 86.584 71,268 NEf INCOME -15,949 7,395 RECONCILIATION OF FUNDS Totsl funds brought forward 141826 135,431 TOTAL FUNDS CARRIED FORWARD 126,877 142,826
The notes fom part of these financial statements Page 8 DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK BALANCE SHEEr 31 DECEMBER 2024 31.12.24 Unrestricted fund 31.12.23 Unrestricted fund Notes CURRENT ASSETS Cash at bank 127,717 143.666 CREDrroRS Amounts falling due within one year (840) (830) NEf CURRENT ASSErs 126,877 142,826 TOTAL ASSEfs LESS CURRENT UABILrrIES 126,877 142,826 NET ASSETS 126,877 142,826 FUNDS Unrestricted funds 126,877 142,826 TOTAL FUNDS 126,877 142,826 The financial statements were approved by the Board of Trustees and authorised for Issue on 16th October 2025 and were signed on its behalf by: Peter Redmond - Treasurer and Trustee Leisa Batkin - Chair and Trustee Ellie Hudson - Secretary and Trustee
The notes form part of these financial statements DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK NOTES TO THE FINANCIAL sfATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024 I. STATUTORY INFORMATION Diamond Blackfan Anaemia Support Group is an unincorporated charity, reglstered in England & Wale5. The charity's registered number and prlnclpal 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 l January 2019),, Financial Reporting Standard 102 The Financial Rewrting Stsndard applicable in the UK and Republic of Ireland, and the Chaiities Att 2011. The financial statements have been prepared under the historical cost convention. In pParIng the financial Statements, the tNsiees are required to make an asse55ment of tho ability of the charty to continue as a going conrn. The trustees have considered all available eviden 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 ca5hflow to the charity. On the basis of this consideration, the tW5tee5 are satisfied that the charity has adequate resources to contlnue in OFerational existen and to meet its liabilities as they fall due for the foreseeable future. In reaching this conclusion they consider that no matsrial uncertainty exists. As a result, the trustees have concluded that it remains appropriate to adopt a going conrn basis of preparation in these financial statements. Income All income is recognised in the Statement of Financial Acilvities On the charity has entitlement to the funds, it is probable that the income will be reiVed and the amount can be measured reliably. Expenditure Liabilities are recognised as expendire as 500n as there is a legal or constructive obligation commtiing the charty to that expenditure, it is probable that a transfer of economic benefits will be required in *ttlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basi5 and has been classified under headings that aggregate all cost related to the category. Where costs fdnnot be directly attributsd to particular headings they have been allocated to activities on a basis consigcent 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 charitsble objettives at the discretion of the trustees. Restricted funds can only be used for particular restricted pUoSe5 within the objects of the charty. Restrittions arlse when specified by the donor or when funds are raised for particular restritted purposes. Further explanation of the nature and purpose of each fund is included in the notes to the financlal ststements 10
Continued ... DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK NOTES TO THE FINANCIAL sfATEMENTS - FOR THE YEAR ENDED 31 DECEMBER 2024 3. OTHER TRADING AcfIvrnES 31.12.24 31.12.23 Fundraising events 519 2,906 4. INVEsfMENT INCOME 31.12.24 31.12.23 Deposit account interest 1.701 1,495 5. INDEPENDENf EXAMINERS, REMUNERATION 31.12.24 31.12.23 Fees payable to the charivs independent examiners for the independent examination of the charity's finanaal statements 840 830 6. TRusfEES' REMUNERATION AND BENEFrrs Durlng the year Trustee; L Batkin was remunerated for consultsncy services totslling £3,000 (2023: £3,000). This is permitted in accordance with a resolution dated 9 luly 2019 updating the Trustee Benefit Clause in the Charity's Governing Document which was approved by the Charty Commission. Trustees, expenses Expenses totalling £366 {2023'. £1,312) were paid to one or more Trustees during the year in relation to expenses. 7. COMPARATIVES FOR THE sfATEMENT OF FINANCIAL AcrivrrIES Unrestricted Fund INCOME AND ENDOWMENTS FROM Donations and legacies 2023 74,262 Other trading activities 2023 Investment income 2023 2,906 1,495 Total 78,663 Total EXPENDrruRE ON Ralsing funds 2023 Other 2023 71,268 Total 71,268 NEf INCOME 7.395 RECONCIUATION OF FUNDS Totsl funds brought forward 135.431 Continued ... DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK
NOTES TO THE FINANCIAL sfATEMENTS- FOR THE YEAR ENDED 31 DECEMBER 2024 7. COMPARATIVES FOR THE sfATEMENT OF FINANCIAL ACTIvrrIES - continued Unrestricted Fund TOTAL FUNDS CARRIED FORWARD 142,826 . CREDITORS: AMOUNTS FALLING DUE wrrHIN ONE YEAR 31.12.24 31.12.23 Other creditors 840 830 9. MOVEMENT IN FUNDS Net movement in fijnds At1.1.24 At31.12.24 Unrestricted funds Genernl fund 142,826 -15,949 126,877 TOTAL FUNDS 142,826 -15,949 126,877 Net movement in funds, included in the above are as follows: Incoming Resources Resources expended Movement in Funds Unrestricted funds General fund 70,635 185,744) -15.949 TOTAL FUNDS 70,635 {85,744) -15,949 Net movement in funds Comparatives for movement in funds At 1.1.23 At31.12.23 Unrestricted funds General fund 135.431 7,395 142.826 TOTAL FUNDS 135.431 7,395 142,826 Continued ... DIAMOND BLACKFAN ANAEMIA SUPPORT GROUP UK 12
NOTES TO THE FINANCIAL sfATEMENTS - FOR THE YEAR ENDED 31 DECEMBER 2024 9. MOVEMENT IN FUNDS- continued Comparative net movement in funds, included in the above are as follows: Incoming Resources Resources expended Movement in Funds Unrestricted funds Generdl fund 68,663 {71.268) 7.395 TOTAL FUNDS 78,663 (71,2681 7,395 A current year 12 months and prior year 12 months combined positron is as follows: Net movement in funds Comparatives for movement in funds At 1.1.23 At31.12.24 Unrestrirted funds General fund 142,826 -15,949 126,877 TOTAL FUNDS 142,826 -15.949 126,877 A current year 12 months and prior year 12 months combined net movement in fund5, included in the above are as follows: Incoming Resources Resources expended Movement in Funds Unrestrirted funds General fund 143,072 (128.468) 14,604 TOTAL FUNDS 143,072 1128,4681 14,604 IILRELATED PARTY DISCLOSURES Transactions with Trustees during the year are summarised in note 6. 13