Registered number: 06981121 Charity number: 1132271 ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) UNAUDITED TRUSTEES. REPORT AND FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) CONTENTS Page Reference and administrative details of the company, its Trustees and advisers Trustees, report Independent examinerfs report 10 Statement of financial activities 11 Balance sheet 12 Notes to the financial statements 13-30
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) REFERENCE AND ADMINISTRATIVE DETAILS OF THE COMPANY, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 MARCH 2025 Trustees Nicholas Jones (resigned 18 January 2026) Ailsa Arthur Sarah Chikhani Rachel Thomas Dr Florence Osborne. Chair Dr Charlotte Dawson Kempton Rees Karolina Stepien (appointed 18 January 2026) Company registered number 06981121 Charlty registered number 1132271 Registered office Black Country House, Rounds Green Road. Oldbury, West Midlands. B69 2DG Independent examlner Crowe U.K. LLP, Black Country House, Rounds Green Road, Oldbury, West Midlands. B69 2DG Page 1
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2025 The Tnjstees present their annual report together with the financial statements of the company for the year 1 April 2024 to 31 March 2025. The Annual report serves the purposes of both a Trustees, report and a directors, report under company law. The Trustees confinn that the Annual report and financial statements of the charitable company comply with the current statutory requirements, the requirements of the charitable companls governing document and the provisions of the Statement of Recommended Practice (SORP) applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102} (effective 1 January 2019). Since the company qualifies as small under section 382 of the Companies Act 2006, the Strategic report required of medium and large companies under the Companies Act 2006 (Strategic Report and Directors, Report) Regulations 2013 has been omitted. Objectives and activities a. Policies and objectives The objects of the Association for Glycogen Storage Disease (UK) as recorded in its Memorandum of Association, is "The relief of sickness, particularly of persons suffering from any form of Glycogen Storage Disease" The Association works to protect and promote the best interests of persons affected by GSD. Public Benefit The Trustees confirm that they have complied with the duty in section 17 of the Charities Act 2011 to have due regard to public benefit guidance published by the Commission in determining the activities undertaken by the Charity. The Charity Commission in its 'Charities and Public Benefit" Guidance states that there are key principles to be met in order to show that an organisation's aims are for the public benefit: firstly, there must be an identifiable benefit and secondly, that benefit must be to the public or a section of the public. The Trustees are satisfied that the aims and objectives of the charity. and the activities reported on below to achieve those aims, meet these principles. b. Strategies for achieving objectives The Association acts as a vehicle of communication on GSD related matters by publishing and distributing relevant material. It contributes to the advancement of treatments and cures through sponsorship of research, studies and trials. It acts as a focus for educational, scientific and charitable activities related to GSD. The Association liaises with other GSD Associations around the world. Please see Review of activities section for details of our current strategy. c. Activities undertaken to achieve objectives The main activities are the support of patients and families. the organising of conferences and workshops to promote understanding of the disease- the publication of a newsletter., the provision of information about Glycogen Storage Disease through publications and a web site- and the provision of grants to research bodies and individuals. These activities support the objects by assisting patients- by encouraging and supporting research into the disease and by educating the medical profession and concemed members of the general public about the disease. Page 2
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Objectives and activities (continued) d. Grant-making policies The Association receives applications for grants to support research projects in relation to Glycogen Storage Disease. Applications for grants are considered by the Board of Trustees and by members of the Association's Medical Advisory Board. Whenever possible the Association co-sponsor together with other charities or foundations. The Association also occasionally makes small grants to individual applicants for personal expenses associated with their treatment, care and well-being. Achievements and perforniance a. Review of activities During the 2024-25 financial year we continued to work towards the goals of our current strategic plan. These are drawn from priorities identified by community members and comprise: Theme: Support across the community- Goal: Everyone affected will be connected to an active and supportive GSD community. Theme= Help with living well. Goal: People with any GSD will be offered the information and activities they need to live well with the condition. Theme" Better treatments and service access. Goal: The community will experience improved management. treatment and Servi access. Theme: Strong and effective organisation. Goal: AGSD-UK will grow sustainably, with robust governance. to increase our impact. Support across the community Over the course of the year the intensive advocacy provided by our care and benefits advisors enabled community members to access much needed services such as home adaptations and equipment grants, education and health care packages, transport, enhanced social care and a range of welfare benefits. Individuals and families also received valued support with issues like dealing with diagnosis. parenting and employment rights.Their feedback included: 'AGSD UK truly is a breath of fresh air for people facing the challenges of rare conditions. Your charity provides more than just advice. you offer a lifeline of empathy, understanding, and non-judgmental support to those who need it most.. .1 would like to express my heartfelt gratitude to AGSD UK. I have Pompe disease, and at times, it can make you feel isolated. Coping with the constant changes to your health and mobility. as well as the day-to-day challenges, can be incredibly tough. AGSD UK has been an unwavering source of support for me." "[AGSD-UK advisors] have been instrumentsl in guiding me Ihrough the complexities of benefit programs, including DLA and carer's allowan. and have also provided invaluable assistance in assessing my overall benefit entitlements. Their support extended beyond paperwork. as they even helped me access food vouchers during times of real hardship." Page 3
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Achievements and perforniance (continued) Our local get-togethers connecting people with others affected also received a very positive response from those attending= 'We had an amazing time and thoroughly enjoyed ourselves. It was such a valuable experience to meet other families facing similar health challenges. which made us feel much less isolated." Living wth such a rare condition can be tough, especially when people don't always understand what we go through, so connecting wth others who do was incredibly comforting." .it was great to connect with other parents of children with GSD and share our experiences, challenges and daily worries." Help with living well Two McArdle's walking courses for under 21s and for adults took place in Wales during July and August 2024 and, as usual, were greatly appreciated by those taking part: "Just wanted to thank you again for organising the walking course and encouraging me to come on it. I had a great time and feel like I learnt a lot.- 'These weekendslweeks are life-changing and life-affirming. From the bottom of my heart, thank you all for an amazing week." "The twns got to be with other teens. young people and older McArdleites. They got to climb mountains they (and we) would never have attempted and do physical things that were bold and audacious." .1 enjoyed the amazing walks that we went on and the cooking. I really liked the activities we did after the walks, like bracelet making, playing games and paddling in the river!" Our monthly Living well socials continue to be extremely well received and a thriving WhatsApp group has been developed alongside the meetings to facilitate mutual support= "Wonderful place to be. Love how positive it is. Thank you... for this safe space" Our regular Glisten magazine packed with information about living with GSDS was widely distributed and further information sheets produced. Website views for the financial year totalled 38,020. Our Main Event for the community staged during the 2024-5 financial year again received outstanding feedback. The evaluation forms completed showed that: 1000/0 said the event enabled them to connect wth others with similar experiences 100°/o said the event gave them the chance to gain tips about living with GSDS 100°/o said the event allowed them to become better informed about research and developments in the field of GSDS Page 4
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Achievements and perforniance (continued) 100 % said the event provided the opportunity to get information about support and services that are available 1000/0 said they had fun and enjoyed themselves The following is just a small selection of the comments received= 'It was superb. Team was great-very helpful. Would like to attend again.. 'Good mix of scientific updates. patent support and fun activities." 'Loved the music therapy on Sunday a.m.° 'The whole AGSD-UK team are wonderful-l Ihoroughly enjoyed the meeting." 'We were very impressed with the organisation and the agenda." 'It was a very valuable experience coming to this event with my family as not only did we meet people who are dealing with the same thing as us but also with professionals who mirror the work they do with our centre." 'Heartfelt thanks for an incredibly well-organised and impaciful conference...The programme ilself was so well curated, delivering both depth and relevance that kept us all engaged throughout the weekend... 'Your hard work, attention to detail and dedication made the event run smoothly and successfully. The sessions were insightful. We truly appreciated it." 'Thank you so much for looking after us. Your care and attention meant a lot. We're truly grateful for everything you do to keep us comfortable and supported. Thank you." 'This was our first time at the conference. Everyone was really helpful and supportive. Thank you so much.. "Excellent weekend -informative and fun. Thank you." Better treatments and service access Throughout the year we continued to support and promote multiple opporlunities for people affected by GSDS to shape and take part in research and trials to enable the development of better treatments. We also worked with industry, health professionals and other charity partners to influence service quality. Work began on the two Loughborough University PhD research programmes relating to diel, exercise and mental health and digital biomarkers in hepatic GSDS that we are joint-funding with the generous support of the Mosawi Foundation. We took part in two further intemational online meetings organised by the Adult Polyglucosan Body Disease Research Foundation, focused on bringing the APBD and GSD IV communilies togelher to develop a joint action and communications plan. AGSD-UK was also represented at an Aspire biosciences speed-daling event. this time with a view to exploring potential partnerships for new trealments for hepatic GSDS. Page 5
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Achievements and perforniance (continued) Strong and effective organisation We continued to benchmark the organisation against established voluntary sector standards, strengthening our processes and policies to ensure these are robust and in line with best practice. This included reviewing ways to ensure our board remains fully inclusive and open to new members to bring a range of skills, ideas and perspectives to our governance and cause. We remain extremely grateful to all those who contribute their time, energy and expertise to help enable AGSD-UK to respond to the needs of those affected by this challenging condition. Financial review a. Going concern The trustees have reasonable expectation that the company has adequate resources to continue in operational existence for the foreseeable future. They continue to believe the going concern basis of accounting is appropriate in preparing the annual financial statements. b. Reserves policy The Association holds some funds that are restricted in expenditure in support of particular GSD Types and other projects {see note 17). The general reserves are used to support the on going activities of the Association. The unrestricted general reserve now stands at £35.987 which is a decrease from the previous year {£43,596). The trustees, future focus will be on increasing income while tightly managing costs. The total restricted funds is now £53,836 (2024: £84.486). In line with most small charities AGSD UK aims to spend most of the funds raised during any given financial year for the benefit of its members and the public and not to build up a large general reserve. The trustees have agreed to adopt a reserve policy that seeks to carry forward an unrestricted general reserve figure that is no greater than 250/0 of total in year expenditure. The funds freely available for use by the charity at the year end at the discretion of the Trustees, amount to the unrestricted reserves less the unrestricted tangible fixed assets of £594. Our free reserves at 31 March 2025 are therefore £35,393 (2024.. £42,798). c. Investment policy and perfomiance The Association holds its cash reserves in bank deposit accounts thus eliminating investment risk and minimising any other risk to the reserves. No long term deposits are made as it is anticipated that the reserves will continue to be called upon to support a high level of activity. Page 6
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Structure, governance and management a. Constitution The company is registered as a charitable company limited by guarantee and was set up under a Memorandum of Association. The company is constituted under a Memorandum of Association dated 0510812009 and is a registered charity number 1132271. The principal object of the company is to provide "The relief of sickness, particularly of persons suffering from any form of Glycogen Storage Disease.. b. Methods of appointment or election of Trustees The management of the company is the responsibility of the Trustees who are elected andlor co opted under the terms of the Articles of Association. Any full member of the Association may be nominated to stand for election to the Board of Trustees. The Trustees have the power to Co-opt new Trustees who are then required to stand for election at the next AGM. . Organisational structure and decision-making policies The Association is a membership based association, with full membership being open to anyone affected by Glycogen Storage Disease and the close family of such persons. The members elect the Board of Trustees. The Board of Trustees elects its own officers. The Board of Trustees are responsible for ensuring that the charity complies with all relevant regulations and files its annual report and accounts with the Charity Commission and Companies House. The Board of Trustees delivers the strategy through the Chief Executive and any other staff plus a range of volunteers. The Board appoint a volunteer Co-ordinator for each of the GSD tes, wherever possible. The defined role is wide ranging and is not necessarily entirely relevant or practical for each GSD Type, where the numbers affected and their needs vary enormously. The COrdInatorS meet as a group three times a year for peer support and development in their role. d. Pay policy for key management personnel The company currently has one part-time permanent member of staff - the Chief Executive, with four part-time freelance team members. The remuneration for key management posts was benchmarked at or below market rate prior to appointment and is reviewed by Trustees annually. Page 7
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Structure, governance and management (continued) e. Financial risk management The Twstees have assessed the major risks to which the company is exposed, in particular those related to the operations and finances of the company. and are satisfied that systems and procedures are in place to mitigate exposure to the major risks. f. Risk Management The Trustees have assessed the major risks to which the company is exposed. The current major risks to the charity are primarily in the areas of operation and finan as follows= Income generation Cost control Banking control l.T. stability and security Adoption of and adherence to policies and procedures Loss of key personnel The Trustees are satisfied that systems. procedures and plans are in place to mitigate exposure to major risks. Plans for future periods The period April 2025-26 is the last of our current strategy and we remain focused on delivering our stated goals. This involves further expansion of our support offer and facilitation of peer support, with a wider range of groups to meet the needs of under-served sections of the community. including children and young people. We will take forward updating of our website, ensuring this contains the current evidence-based information people need to help them live well and is attractive. engaging and easy to navigate. Our ongoing research support will ensure studies and developments in treatment and management are shaped by the needs of the community. We will also complete our work to benchmark the organisation against best practice standards for the sector, as part of our quality improvement cycle. In addition, we will take forward a community listening exercise to inform the key goals for our next three year strategy. To deliver our plans we will continue to support fundraising efforts within the community, while seeking the help of grant making trusts aligned with our goals and working closely with our valued industry partners. We would like to express our appreciation to all those individuals and organisations who contribute to our work and our special thanks go to., Amicus, Beam. Community Fund, D.0Y Carte Charitable Trust, Mosawi Foundation, Sanofi, Ultragenyx and Vitaflo for their commitment to improving lrfe for people affected by GSD. Page 8
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Statement of Trustees, responsibilities The Trustees (who are also the directors of the company for the purposes of company law) are responsible for preparing the Trustees, report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practi). Company law requires the Trustees to prepare financial statements for each financial . Under company law, the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the company and of its incoming resources and application of resources, including its income and expenditure, for that period. In preparing these financial statements. the Trustees are required to: select suitable accounting policies and then apply them consistently. observe the methods and principles of the Charities SORP (FRS 102)., make judgments and accounting estimates that are reasonable and prudent; state whether applicable UK Accounting Standards {FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements., prepare the financial slatements on the going concern basis unless it is inappropriate to presume that the company will continue in business. The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the companls transactions and disclose with reasonable accuracy at any time the financial position of the company and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the company and hence for taking reasonable steps for the prevention and detection of fraud and other legUlarl11es. Approved by order of the members of the board of Trustees on 2910112026 *okeMce Oiboklle and signed on their behalf by.. Flor.qnF.o.Q?P.orn¢,'Jon 2.2.2.Q?fr.IA".ie"49.&MTI Dr Florence Osborne Chair Page 9
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 MARCH 2025 Independent Examinerfs Report to the Trustees of Association for Glycogen Storage Disease (UK) Limited ('the company.) I report to the charity Trustees on my examination of the accounts of the company for the year ended 31 March 2025. Responsibilities and Basis of Report As the Trustees of the company (and its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 {'the 2006 Act,). Having satisfied myself that the accounts of the company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of the companys accounts carried out under section 145 of the Charities Act 2011 ('the 2011 Act.). In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act. Independent Examinerfs Statement I have completed my examination. I confimi that no matters have come to my attention in connection with the examination giving me cause to believe: accounting records were not kept in respect of the company as required by section 386 of the 2006 Act; or the accounts do not accord witt) those records; or the accounts do not comply with the accounting requirements of section 396 of the 2006 Act 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. or the accounts have not been prepared in accordance with the methods and principles of the Statemenl of Recommended practi for accounting and reporting by charities [applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)]. 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. This report is made solely to the companvs Trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. My work has been undertaken so that I might state to the companls Trustees those matters l am required to state to them in an Independent examiner's report and for no other purpose. To the fullest extent permitted by law. I do not acpt or assume responsibility to anyone other than the company and the companls Trustees as a body, for my work or for this report. Signed: Helen Blundell Dated: 29 January 2026 LLB FCA FCIE DChA Crowe U.K. LLP Chartered Accountants Black Country House Rounds Green Road Oldbury West Midlands B69 2DG Page 10
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) STATEMENT OF FINANCIAL ACTIVITIES (INCORPORATING INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 MARCH 2025 Restricted Unrestricted funds funds 2025 2025 Total funds 2025 Total funds 2024 Note Income from: Donations and legacies Charitable activities 89,850 60,009 830 149,859 830 277,395 875 Other trading activities Investments 5.986 16,042 1,235 22,028 1,235 21,738 1,120 1,149 Other income Total income 95,836 78,116 173,952 242,277 Expenditure on: Charitsble activities 145.124 67,087 212,211 197,548 Total expenditure 145,124 67,087 212,211 197,548 Net (expenditure)lincome Transfers between funds (49,288) 18.638 11,029 (18,638) (38,259) 44, 729 18 Net movement in funds (30,650) (7,609) (38,259) 44, 729 Reconciliation of funds: Total funds brought forward 84.486 43,596 128,082 83,353 Total funds carried fOard 53,836 35,987 89,823 128,082 The Statement of Financial Activities includes all gains and losses recognised in the year. The notes on pages 13 to 30 form part of these financial statements. Page 11
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) REGISTERED NUMBER: 06981121 BALANCE SHEET AS AT 31 MARCH 2025 2025 2024 Note Fixed assets Tangible assets 15 594 798 594 798 Current assets Debtors Cash at bank and in hand 16 6,149 93,253 3,478 130,666 99,402 134, 144 Current liabilities Creditors: amounts falling due within one year {10,173) (6,860) 17 Total net assets 89,823 128,082 Charity funds Restricted funds 18 53,836 35,987 84,486 43,596 Unrestricted funds 18 Total funds 89,823 128,082 The company was entilled to exemption from audit under section 477 of the Companies Act 2006. The members have not required the company to obtain an audit for the year in question in accordance with section 476 of Companies Act 2006. The Trustees acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and preparation of financial statements. The financial statements have been prepared in accordance with the provisions applicable to entities subject to the small companies regime. The financial statements were approved and authorised for issue by the Tnjstees on 2910112026 and signed on their behalf by.. tIpiRnM.Q5kornta4p.L4.L44kLU"A¥;4.Qvl Dr Florence Osborne Chair The notes on pages 13 to 30 form parl of these financial statements. Page 12
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 General information 1.1 Company Status The Association for Glycogen Storage Disease (UK) Limited is a company limited by guarantee in England, whose registered office is Black Country House, Rounds Green Road, Oldbury, West Midlands, B29 2DG. The companls registered number is 06981121. In the event of the company being wound up. the liability in respect of the guarantee is limited to £10 per member of the company. Accounting policies 2.1 Basis of preparation of financial statements The financial statements 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), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006. Association for Glycogen Storage Disease (UK) Limited is a private company limited by guarantee and meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy. 2.2 Going concern The trustees have a reasonable expectation that the company has adequate resources to continue in operational existence for the foreseeable future. They continue to believe the going concern basis of accounting appropriate in preparing the annual financial statements. 2.3 Income All income is recognised once the company has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably. Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation. Income tax recoverable in relation to investment income is recognised at the time the investment income is receivable. 2.4 Expenditure Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party. 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 classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, induding support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset's use. Page 13
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 Accounting policies (continued) 2.4 Expenditure (continued) Expenditure on charitable activities is incurred on direcdy undertaking the activities which further the companys objectives, as well as any associated support costs. Grants payable are charged in the year when the offer is made except in those cases where the offer is conditional. such grants being recognised as expenditure when the conditions attaching are fulfilled. Grants offered subject to conditions which have not been met at the year end are noted as a commitment, but not accrued as expenditure. Support costs are those costs incurred directly in support of expenditure on the objects of the company. Governance costs are those incurred in connection with administration of the company and compliance with constitutional and statutory requirements. Costs of generating funds are costs incurred in attracting voluntary income. and those incurred in trading activities that raise funds. Charitable activities and Governance costs are costs incurred in the companls educational operations, including support costs and costs relating to the governance of the company apportioned to charitable activities. 2.5 Cash flow The company has taken advantage of the exemption in Financial Reporting Standard No.1 from the requirement to produce a cash flow statement on the grounds that it is a small charitable company. 2.6 Intangible assets and amortisation Intangible assets costing £500 or more are capitalised and recognised when future economic benefits are probable and the cost or value of the asset can be measured reliably. Intangible assets are initially recognised at cost. After recognition, under the revaluation model, intangible assets shall be carried at a revalued amount, being their fair value at the date of revaluation less any subsequent accumulated amortisation and subsequent impairment losses provided that the fair value can be determined by reference to an active market. Revaluations are made with sufficient regularity to ensure that the carrying amount does not differ materially from that which would be determined using fair value at the end of the reporting period. Amortisation is provided on intangible assets at rates calculated to write off the cost of each asset on a straight-line basis over its expected useful life. Amortisation is provided on the following basis: Website development 20 0/0 straight line Page 14
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 Accounting policies (continued) 2.7 Tangible fixed assets and depreciation A review for impairment of a fixed asset is carried out if events or changes in circumstances indicate that the carrying value of any fixed asset may not be recoverable. Shortfalls between the carrying value of fixed assets and their recoverable amounts are recognised as impairments. Impairment losses are recognised in the Statement of Financial Activities incorporating income and expenditure account. Tangible fixed assets are initially recognised at cost net of accumulated depreciation and any accumulated impairment losses. Al costs incurred to bring a tangible fixed asset into its intended working condition should be included in the measurement of cost. Depreciation is charged so as to allocate the cost of tangible fixed assets less their residual value over their estimated useful lives. on a reducing balance basis. Depreciation is provided on the following basis: Office equipment 250k reducing balan 2.8 Financial instruments Debtors Short term debtors are measured at transaction price. less any impairment. Creditors Short term trade creditors are measured at transaction pri. Cash Cash is represented by cash in hand and deposits with financial institutions repayable without penalty on notice of not more than 24 hours. There are no complex financial instruments. 2.9 Pensions The pension costs charges in the financial statements comprise contributions payable by the Charity during the year for a defined contribution personal pension plan for staff. The Charity contributes 3 % of eligible pay for those employees enrolled in the plan. 2.10 Fund accounting General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the company and which have not been designated for other purposes. Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the company for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements. Page 15
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 Accounting policies (continued) 2.11 Role of Volunteers The charity relies on the efforts of its volunteers. The value of these volunteers is not incorporated within the accounts. Critical accounting estimates and areas of judgment Estimates and judgments are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances. Critical accounting estimates and assumptions: Critical areas of judgment: Donations of consulting by Andrew Wakelin Donations of conference guest speakers (iii) Donations of services including printing. graphic design. meeting rooms and consultant attendance of events In accordance with the Charities SORP FRS 102, the charity has valued the benefit it receives from donations in kind of £55.505 (2024.- £52,271). This is based on the open market value of benefits received. Income from donations and legacies Restricted Unrestricted funds funds 2025 2025 Total funds 2025 Total funds 2024 Donations 6.478 6,478 21,556 5,000 134,550 52,271 4,018 Legacies Grants 67,290 22.560 18.000 32,945 2,586 85,290 55,505 2,586 Donations in kind Gift aid Total 2025 89.850 60,009 149,859 217,395 Total 2024 155,150 62,245 217,395 Page 16
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 Income from charitable activities Unrestricted funds 2025 Total funds 2025 Total funds 2024 Subscriptions 830 830 875 Total 2024 875 875 Income from other trading activilies Income from fundraising events Restricted Unrestricted funds funds 2025 2025 Total funds 2025 Total funds 2024 Fundraising events 5.986 16.042 22,028 21,738 Total 2024 6,248 15,490 21,738 Investment income Unrestrlcted funds 2025 Total funds 2025 Total funds 2024 Investment income 1,235 1,235 1, 120 Total 2024 1, 120 1, 120 Page 17
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 Other incoming resources Unrestricted funds 2025 Total funds 2025 Total funds 2024 Other income 1,149 Total 2024 1, 149 1, 149 Analysis of grants Grants to Individuals 2025 Grants to Institution 2025 Total funds 2025 Total funds 2024 Grants 1,900 24,616 26,516 12,728 Total 2024 420 12,308 12, 728 In 2025 1 grant was given to institutions {2024.- 1) and 8 to individuals (2024.. 1). Page 18
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 10. Analysis of expenditure by activities Activities undertaken directly 2025 Grant funding of activities 2025 Support costs 2025 Total funds 2025 Total funds 2024 Charitable activities 151,085 26.516 34,610 212,211 197,548 Total 2024 152,079 12,728 32,741 197,548 Analysis of direGI costs Charitable activities 2025 Total funds 2025 Total funds 2024 Staff costs Conference expenses Walking Course Consultancy Travel and accommodation expenses Freelancer consulting costs Patient and Family meetings 24,533 32,764 24,533 32,764 24,533 27,449 9,848 52,271 928 55,505 940 55,505 940 37,090 253 37,090 253 37,050 Total 2025 151.085 151,085 152,079 Total 2024 152,079 152,079 Page 19
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 10. Analysis of expenditure by activities (continued) Analysis of support costs Charitable activities 2025 Total funds 2025 Total funds 2024 Rent 1,896 651 1,896 651 1,842 308 Office Costs Online services Website and computer costs Sundry expenses Subscriptions Insurance 1,095 8.446 10 1,095 8,446 10 962 10,594 425 566 566 599 677 677 706 3,189 101 216 Printing, post and stationery Fundraising Depreciation - office equipment Amortisation - website development Staff training Accountancy & payroll Independent examiners fee Staff costs 4.064 320 204 4,064 320 204 11,438 3.186 2.057 11,438 3,186 2,057 9, 602 2,963 1,234 Total 2025 34,610 34,610 32,741 Total 2024 32,741 32,741 During the year ended 31 March 2025. the company incurred the following Governance costs: £14,624 (2024 - £12,590) included in the table above. 11. Independent examinerfs remuneration The independent examiner's remuneration amounts to an independent examiner fee of £3,186 (2024- £2, 963). Page 20
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 12. Staff costs 2025 2024 Wages and salaries Social security costs Pension costs 24,000 2,057 533 24,000 1,234 533 26,590 25,767 The average number of persons employed by the company during the year was as follows: 2025 No. 2024 No. The key management personnel of the charity are the Trustees and Chief Executive. Total employee benefits of key management personnel of the charity were £24,533 (2024.. £24,533). No employee received remuneration amounting to more than £60.000 in either year. 13. Trustees. remuneration and expenses During the year. no Trustees received any remuneration or other benefits (2024 - £NIL). During the year ended 31 March 2025, expenses totalling f362 were reimbursed or paid directly to 1 Trustee (2024 - £NIL to 1 Trustees) to cover expenses incurred relating to travel expense reimbursement for the Hepatic Get Together and Team Meetings. Page 21
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 14. Intangible assets Website developmen Cost At 1 April 2024 23,938 At 31 March 2025 23,938 Amortisation At 1 April 2024 23,938 At 31 March 2025 23,938 Net book value At 31 March 2025 At 31 March 2024 Page 22
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 15. Tangible fixed assets Office equipment Cost or valuation At 1 April 2024 7,538 At 31 March 2025 7,538 Depreciation At 1 April 2024 Charge for the year 6,740 204 At 31 March 2025 6,944 Net book value At 31 March 2025 594 At 31 March 2024 798 Page 23
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 16. Debtors 2025 2024 Due within one year Other debtors Prepayments and accrued income 5,106 1,043 2,512 966 6,149 3,478 17. Creditors: Amounts falling due within one year 2025 2024 Trade creditors 2,970 592 1,184 5,427 Other taxation and social security Other creditors 1,933 4,927 Accruals and deferred income 10,173 6, 860 Page 24
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 18. Statement of funds Statement of funds - current year Balance at 31 March 2025 Balance at 1 April 2024 Transfers inlout Income Expenditure Unrestricted funds General Funds - all funds 43.596 78,116 {67,087) (18,638) 35,987 Balance at 31 March 2025 Balance at 1 April 2024 Transfers inlout Income Expenditure Restricted funds Type 2 Pompe Type 5 Mcardle Type 3 Cori Type 1 Van Gierke Type 6 Hers Fund Type O Better treatments and service access 3,941 4.855 375 695 (3,512) {23,870) 1,124 9,757 28,772 {375) (12,775) {602) {165) 12.775 602 165 15,633 21,183 28,683 {22,088) {26,574) {35,706) {24,616) (8,758) 6,455 5,384 6,799 Help with living well Support across the community PHD Project Hepatic 224 61.542 36,926 6,029 870 13,917 84,486 95,836 (145,124) 18,638 53,836 Balance at 31 March 2025 Balance at 1 April 2024 Transfers inlout Income Expenditure Total of funds 128.082 173,952 (212,211) 89,823 Page 25
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 18. Statement of funds (continued) Statement of funds - prior year Balance al 31 March 2024 Balance at 1 Apnl 2023 Transfers in/out Income Expenditure Unrestricted funds General Funds - all funds 24,159 80,879 (61,069) (373) 43,596 Restricted funds Type 2 Pompe Type 5 Mcardle Type 3 Cori Type 1 Van Gierke Type 6 Hers Fund Conferences Type O Better treatments and service access 7.294 8,528 3,309 17,532 602 21,331 165 (3,353) (32,331) (2, 934) (4, 757) 3,941 4,855 375 28. 658 12,775 602 1, 190 (22,631) 110 165 15,733 23,833 18,134 73,850 (15,996) (23, 826) (18,343) (12,308) 263 Help with living well Support across the community PHD Project 433 224 61,542 59,194 161,398 (136,479) 3T3 84,486 Total of funds 83,353 242,277 (197,548) 128,082 Page 26
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 19. Summary of funds Summary of funds - current year Balance at 31 March 2025 Balance at 1 April 2024 Transfers inlout Income Expenditure General funds 43.596 84,486 78,116 95,836 (67,087) (145,124) (18,638) 18,638 35,987 53,836 Restricted funds 128,082 173,952 (212,211) 89,823 Summary of funds - prior year Balance at 31 March 2024 Balance at 1 Apn"12023 Transfers in/out Income Expenditure General funds 24.159 59,194 80,879 161,398 (61,069) (136,479) (373) 373 43,596 84,486 Restricted funds 83,353 242,277 (197,548) 128,082 Page 27
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 19. Summary of funds (continued) Restricted Funds Type 2 Pompe's Supporting GSD Type 2. Pompe. Type 5 McArdles Supporting GSD Type 5. McArdle. Type 3 Cori Supporting GSD Type 3. Cori. Type 1 Von Gierke Supporting GSD Type 1. Von Gierke. Type 6 Hers Fund Supporting GSD Type 6. Hers. Hardship Fund Supporting patients and families suffering hardship. Conferences Supporting AGSD-UK Annual conference. Medical Advisory Board Supporting meetings of AGSD-UK Medical Advisors. Specialist Care Advisor Supporting the provision of a Pompe patient support vrker. Type O Supporting GSD Type O. Patient Education and Empowemient Supporting patients and families by providing family days. Better treatments and service access Supporting activities to promote better treatments and Servi access through research engagement and Vrk with professionals and partners. Page 28
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 19. Summary of funds (continued) Help with living well Supporting activities to enable people affected to live well with GSDS, including information. educational programmes and therapeutic activities. Support across the community Supporting activities to ensure support is available across the GSD community. PHD Projects Grant contribution to PhD studentship 1 Eating, physical activity and mental health. Grant contribution to PhD studentship 2 Investigating digital biomarkers to support safe physical activity- Hepatic Supporting people affected by hepatic GSDS Transfers between funds A transfer of £6,455 was made during the year from the general fund to the Better Treatments and Service Access fund, of £5,384 to the Help With Living Well fund, £6,799 to the Support Across the Community fund to cover the deficits at the year end. Transfers of £375 from Type 3 Cori fund, £12,775 from the Type 1 Van Gierke fund, £602 from the Type 6 Hers fund and £165 from the Type O fund were made to the Hepatic fund. The hepatic funds have been amalgamated to recognise that funds allocated to GSD1 were intended for use across hepatic GSDS. 20. Analysis of net assets between funds Analysis of net assets between funds - current year Restricted Unrestricted funds funds 2025 2025 Total funds 2025 Tangible fixed assets Current assets 594 594 53,917 (81) 45,485 (10,092} 99,402 (10,173) Creditors due within one year Total 53,836 35,987 89,823 Page 29
ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 20. Analysis of net assets between funds (continued) Analysis of net assets between funds - prior year Restricted Unrestricted funds funds 2024 2024 Total funds 2024 Tangible fixed assets Current assets 798 798 86, 020 (1,534) 48, 124 (5,326) 134, 144 (6,860) Creditors due within one year Total 84,486 43,596 128,082 21. Pension commitments The Charity operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the Charity in independentiy administered funds. The pension cost shown in note 11 represents the contributions payable by the Charity to these funds. Included in other creditors is a balance of £8112024 - £104) which relates to the pension fund. 22. Related party transactions There were no related paty transactions in the year ended 31 March 2025. Page 30