AGSD-UK Annual Report 2020/21 : simplebooklet.com

ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) REFERENCE AND ADMINISTRATIVE DETAILS OF THE COMPANY, ITS TRUSTEES AND ADVISERSFOR THE YEAR ENDED 31 MARCH 2021Trustees Jayesh PindoliaNicholas JonesAilsa ArthurRobert Seaborne (resigned 31 July 2021)Sarah Chikhani (appointed 22 July 2020)Rachel Thomas (appointed 22 July 2020)Dr Emilie Florence Osborne (appointed 1 May 2021)Company registered number06981121Charity registered number1132271Registered officeBlack Country House, Rounds Green Road, Oldbury, West Midlands, B69 2DGIndependent examinerCrowe U.K. LLP, Black Country House, Rounds Green Road, Oldbury, West Midlands, B69 2DGPage 1

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES' REPORTFOR THE YEAR ENDED 31 MARCH 2021The Trustees present their annual report together with the financial statements of the company for the 1 April2020 to 31 March 2021. The Annual report serves the purposes of both a Trustees' report and a directors' reportunder company law. The Trustees confirm that the Annual report and financial statements of the charitablecompany comply with the current statutory requirements, the requirements of the charitable company'sgoverning document and the provisions of the Statement of Recommended Practice (SORP) applicable tocharities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK andRepublic of Ireland (FRS102) (effective 1 January 2015) as amended by Update Bulletin 2 (effective January2019). Since the company qualifies as small under section 382 of the Companies Act 2006, the Strategic reportrequired 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 ofAssociation, is “The relief of sickness, particularly of persons suffering from any form of Glycogen StorageDisease”. The Association works to protect and promote the best interests of persons affected by GSD. Public BenefitThe Trustees confirm that they have complied with the duty in section 17 of the Charities Act 2011 to have dueregard to public benefit guidance published by the Commission in determining the activities undertaken by theCharity. The Charity Commission in its "Charities and Public Benefit" Guidance states that there are two key principles tobe met in order to show that an organisation's aims are for the public benefit: firstly, there must be an identifiablebenefit and secondly, that benefit must be to the public or a section of the public. The Trustees are satisfied thatthe aims and objectives of the charity, and the activities reported on below to achieve those aims, meet theseprinciples. b. Strategies for achieving objectives The Association acts as a vehicle of communication on GSD related matters by publishing and distributingrelevant 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. TheAssociation liaises with other GSD Associations around the world. c. Activities undertaken to achieve objectives The main activities are the support of patients and families; the organising of conferences and workshops topromote understanding of the disease; the publication of a newsletter; the provision of information aboutGlycogen Storage Disease through publications and a web site; and the provision of grants to research bodiesand individuals. These activities support the objects by assisting patients; by encouraging and supportingresearch into the disease and by educating the medical profession and concerned members of the generalpublic about the disease. Page 2

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES' REPORT (CONTINUED)FOR THE YEAR ENDED 31 MARCH 2021Objectives and activities (continued)d. Grant-making policies The Association receives applications for grants to support research projects in relation to Glycogen StorageDisease. Applications for grants are considered by the Board of Trustees and by members of the Association’sMedical Advisory Board. Whenever possible the Association co-sponsor together with other charities orfoundations. The Association also occasionally makes small grants to individual applicants for personalexpenses associated with their treatment, care and well-being. Achievements and performance a. Review of activities 2020 has not been an easy year for the charity sector. This has been well publicised in the media. Despite thisthe AGSD-UK has remained strong and has continued to provide support to the GSD community.Our 2020 conference was cancelled and replaced by the highly successful online Winter Season. All membersof the community took part with presentations from health professionals, researchers, information on diet andpatients life stories. It is still available to view on the charities' YouTube channel. Woven into this were meet-upsonline with coffee mornings, children’s quizzes and competitions, keeping up the spirits when no-one was able tomeet up in person. A similar format will take place this year {2020 and spilling over into 2021} due to uncertaintyover the pandemic. It is sincerely hoped that 2022 will see the return of the annual conference and face to facemeetings.The pandemic has resulted in a 40% increase in requests for help. This included requests for advice aboutshielding, accommodation, shopping and supplies. Several letters were written to MPs and to local governmentseeking access to support for members of our community.Requests for grants similarly increased. For example, applications were made for urgent home adaptations toensure independent living without the need for daily carers. There was a 40% increased demand for benefit cheques and help with filling out forms such as PIP, Daily LivingAllowance, Universal Credit and Employment Support Allowance. To support mental health members were offered an online mental wellbeing course in response to manyrequests for help. A mental health booklet was produced by Ben Parker, a member of our Pompe SupportTeam. This has been much acclaimed and reprints have been sought internationally. A COVID-19 advice area was created on the website. This was well received by the community members,industry and professionals.Time was devoted to developing online support. For example, weekly coffee mornings and advice surroundingvirtual hospital appointments. Tune in Tuesdays, hosted by volunteer Gemma Seyfrang proved a great success.During lockdown the Pompe Support Team wanted to create a fun opportunity for children with the avatarcompetition. The drawings were used to create a tea towel which are still available to buy.Volunteer Andrew Wakelin was featured in the National Magazine. In the article Andrew talks about his lifetimelove of walking and the Walking with McArdle’s courses. Andrew has been organising and leading for over tenyears and helped many people. Page 3

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES' REPORT (CONTINUED)FOR THE YEAR ENDED 31 MARCH 2021Achievements and performance (continued)The charity was lucky enough to support Lisa Massimo through two weeks of work experience, while shecompleted her MSc in Genetic Counselling. She became involved in the Pompe community, learning about thedifficulties that surround obtaining genetic support. This year has seen the application of a new drug for Pompe, Avalglucosidase-alfa, seeking approval throughNICE. Advice on living with the disease from NICE was sought through the AGSD-UK. We were delighted tocollaborate with MDUK, MSUK and Genetic Alliance. Luke Fraser and Kempton Rees represented the charity atthe NICE scoping process. Further work and collaboration are taking place to ensure the charity is ready for theappraisal process of avalglucosidase and a further drug, recently developed for Pompe, Cipalglucosidase. The AGSD-UK has continued to host the hepatic guidelines meetings. Consultants, Clinical Nurse Specialistsand Dietitians from throughout the UK are all invited to discuss anything concerned with hepatic gsds. These arelively and well attended where case studies, research and best practise are all talked through and problems areposed and answers found.StaffMoving beyond the year covered in the report there has been an increase in the number of staff employed. ValBuxton has joined us a part time employee and all other staff now work for us on a self-employed freelancebasis. This has ameliorated one of the charity's key risks; loss of key personnel. We welcome Vicki Lucass whoas our winter season producer but has now taken on the extra role of charity coordinator. Elizabeth Davenport has recently joined us bringing with her many years of experience as a charity familiesadvocate. She will now take over part of the role of the Specialist Care Advisor. Zainab Hussain is another new face and will be taking on the role of benefits advisor. This is an area she bringsmany years of skill and experience to. She will be replacing Julie Jackson, who is stepping down as our currentbenefits advisor. We are sad to see Julie go who had a 100% success rate in all benefits appeals. The appealsprocess is challenging and anxiety inducing for claimants. Julie calmly supported people through theirsubmissions and was always on the receiving end of much praise and thanks. Our gratitude and best wishes forthe future go out to her. We are delighted that Jackie Henson has taken on some extra duties. In addition to her role in finance she isnow responsible for administration and areas of the website as our Charity Officer.Jane Lewthwaite is stepping away from her full-time contract to work freelance and consequently reduced hours.The trustees cannot thank Jane enough for her steadfastness and dedication to the charity during the pandemic.Despite the step back, Jane is still very much involved with and a supporter of the charity.September 2021 saw the appointment of our CEO, Val Buxton. The trustees are delighted to welcome her. Shehas an extensive background in the health and charities sectors, working at a senior level to improve policy andservices. She will use this experience to ensure that the hard work that has built the AGSD-UK is used as afoundation to grow the charity and allow it to thrive. Page 4

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES' REPORT (CONTINUED)FOR THE YEAR ENDED 31 MARCH 2021Achievements and performance (continued)FundraisingWe want to thank everyone who has contributed to fundraising. Our community has continued to raise moneyfor the charity during the pandemic, not an easy task. Our thanks go to:-Eileen RiceAshley EustaceLynn SharmanBedford Park Masonic H Find Gemma Seyfrang and Kieran StubbingsFrank and Irene GreenGrant Fraser Nigel WalkerJennifer WoodSonia WorthyDawn FitzroyLucy MoranSimon AtewellGeorgie ThompsonSylvia WilsonNikki ChristieMedia 10 in memory of Louise BettFlo OsborneWe also wish to thank the volunteers who have put in many hours of work. Our immense gratitude for their hardwork and dedication. The time that is put in from professionals and volunteers is included as benefit-in-kind.Each year it can total around £60,000 Our thanks go for the continued support from Industry, Foundations and Trusts. This includes:-AmicusAstellas/AudentesAvro BioEdward Gostling FoundationFMR Global HealthSangomoSanofi GenzymeSpark TherapeuticsUltragenyxVitafloFinanceIt can be seen that grants from industry have dropped this year. This can be accounted for in the main, by thecancellation of the annual face to face conference and replaced by an on-line conference. Grants from industryreflected the smaller costs of the virtual conference. Grants for patient support, education and communityengagement continue to be sought and given. Savings have been made this year as staff work from home and travel and face to face meetings have been cutto a minimum in line with the government guidelines issued during the pandemic. The charity's finances remainin a robust position. Page 5

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES' REPORT (CONTINUED)FOR THE YEAR ENDED 31 MARCH 2021Financial review a. Going concern The trustees have reasonable expectation that the company has adequate resources to continue in operationalexistence for the foreseeable future. They continue to believe the going concern basis of accounting isappropriate 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 andother projects (see note 18). The general reserves are used to support the on going activities of the Association.The unrestricted general reserve now stands at £27,301 which is an increase from the previous year (£16,548).The trustees’ future focus will be on increasing income while tightly managing costs.In line with most small charities AGSD UK aims to spend most of the funds raised during any given financial yearfor the benefit of its members and the public and not to build up a large general reserve. The trustees haveagreed to adopt a reserve policy that seeks to carry forward an unrestricted general reserve figure that is nogreater than 25% of total in year expenditure. The Trustees are currently reviewing the amount that this shouldbe, but because future expenditure will be reduced they believe the amount to be approximately £20,000. c. Investment policy and performance The Association holds it cash reserves in bank deposit accounts thus eliminating investment risk and minimisingany other risk to the reserves. No long term deposits are made as it is anticipated that the reserves will continueto be called upon to support a high level of activity. Structure, governance and management a. Constitution The company is registered as a charitable company limited by guarantee and was set up under a Memorandumof Association. The company is constituted under a Memorandum of Association dated 05/08/2009 and is aregistered 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 and/or co opted under theterms of the Articles of Association. Any full member of the Association may be nominated to stand for electionto the Board of Trustees. The Trustees have the power to co-opt new Trustees who are then required to standfor election at the next AGM. Page 6

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES' REPORT (CONTINUED)FOR THE YEAR ENDED 31 MARCH 2021Structure, governance and management (continued)c. Organisational structure and decision-making policies The Association is a membership based association, with full membership being open to anyone affected byGlycogen Storage Disease and the close family of such persons. The members elect the Board of Trustees. TheBoard of Trustees elects its own officers. The Board of Trustees are responsible for ensuring that the charitycomplies with all relevant regulations and files its annual report and accounts with the Charity Commission andCompanies House.The Board of Trustees delivers the strategy through the Charity Director and any other staff plus a range ofvolunteers.The Board appoint a volunteer Co-ordinator for each of the GSD Types, wherever possible. The defined role iswide ranging and is not necessarily entirely relevant or practical for each GSD Type, where the numbers affectedand their needs vary enormously. The Co-ordinators meet as a group three times a year for peer support anddevelopment in their role. d. Pay policy for key management personnel The company currently has one permanent member of staff – the Specialist Care Advisor, and moving beyondthe year covered in the report there has been an increase in the number of staff employed to include three part-time members of staff. The remuneration for key management posts was benchmarked at or below market rate prior to appointmentand is reviewed by Trustees annually. e. Risk Management The Trustees have assessed the major risks to which the company is exposed. The current major risks to thecharity are primarily in the areas of operation and finance as follows:Income generationCost controlBanking controlI.T. stability and securityAdoption of and adherence to policies and proceduresLoss of key personnelThe Trustees are satisfied that systems, procedures and plans are in place to mitigate exposure to major risks. Page 7

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee) TRUSTEES' REPORT (CONTINUED)FOR THE YEAR ENDED 31 MARCH 2021Plans for future periods In relation to 2021-22, as with the previous financial year both costs and funding for face to face activities havereduced, and we are looking at similar overall levels of income and expenditure.Looking forward, we're working to develop a new 3 year strategy built on the priorities of the AGSD community tohelp us better engage with potential funders. The strong relationship with the treatment industry is continuing andwork on promising new therapies offers scope for further partnerships and funding to support shared goals.Though funding for core costs remains challenging, our fixed costs are limited and we'll ensure overheads areproperly reflected in project funding bids and use the new strategy to underpin a systematic approach to trustfunders for further support.For 2022 -23 we expect to see some uplift in funding and expenditure to reflect an increase in face to faceactivities, with the expectation of some growth in both income and expenditure in the years ahead. Statement of Trustees' responsibilities The Trustees (who are also the directors of the company for the purposes of company law) are responsible forpreparing the Trustees' report and the financial statements in accordance with applicable law and UnitedKingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).Company law requires the Trustees to prepare financial statements for each financial . Under company law, theTrustees must not approve the financial statements unless they are satisfied that they give a true and fair view ofthe state of affairs of the company and of its incoming resources and application of resources, including itsincome 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 materialdepartures disclosed and explained in the financial statements;• prepare the financial statements on the going concern basis unless it is inappropriate to presume that thecompany will continue in business.The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explainthe company's transactions and disclose with reasonable accuracy at any time the financial position of thecompany and enable them to ensure that the financial statements comply with the Companies Act 2006. Theyare also responsible for safeguarding the assets of the company and hence for taking reasonable steps for theprevention and detection of fraud and other irregularities. Approved by order of the members of the board of Trustees on_________________________________________________ and signed on their behalf by:Nicholas JonesTrusteePage 8

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) INDEPENDENT EXAMINER'S REPORTFOR THE YEAR ENDED 31 MARCH 2021Independent Examiner's 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 March2021.Responsibilities and Basis of ReportAs the Trustees of the company (and its directors for the purposes of company law) you are responsible for thepreparation 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 the2006 Act and are eligible for independent examination, I report in respect of my examination of the company'saccounts carried out under section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examinationI have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.Independent Examiner's StatementI have completed my examination. I confirm that no matters have come to my attention in connection with theexamination giving me cause to believe:1. accounting records were not kept in respect of the company as required by section 386 of the 2006 Act;or2. the accounts do not accord with those records; or3. the accounts do not comply with the accounting requirements of section 396 of the 2006 Act other thanany requirement that the accounts give a 'true and fair' view which is not a matter considered as part ofan independent examination; or4. the accounts have not been prepared in accordance with the methods and principles of the Statement ofRecommended Practice for accounting and reporting by charities [applicable to charities preparing theiraccounts in accordance with the Financial Reporting Standard applicable in the UK and Republic ofIreland (FRS 102)].I have no concerns and have come across no other matters in connection with the examination to whichattention 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 company's 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 company'sTrustees those matters I am required to state to them in an Independent examiner's report and for no otherpurpose. To the fullest extent permitted by law, I do not accept or assume responsibility to anyone other than thecompany and the company's Trustees as a body, for my work or for this report.Signed: Dated: Kerry BrownFCACrowe U.K. LLPChartered AccountantsBlack Country HouseRounds Green RoadOldburyWest MidlandsB69 2DGPage 9

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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 2021Restrictedfunds2021Unrestrictedfunds2021Totalfunds2021Totalfunds2020Note £ £ £ £Income from:Donations and legacies425,79479,788105,582184,996 Other trading activities51,78412,95614,74020,644 Investments6-4242154 Other income71,0531,4642,5178 Total income28,631 94,250 122,881 205,802Expenditure on:Raising funds81,972-1,9724,152 Charitable activities56,19983,497139,696212,982 Total expenditure58,171 83,497 141,668 217,134Net movement in funds (29,540) 10,753 (18,787) (11,332)Reconciliation of funds: Total funds brought forward 111,73616,548128,284139,616 Total funds carried forward 82,196 27,301 109,497 128,284The Statement of Financial Activities includes all gains and losses recognised in the year.The notes on pages 12 to 30 form part of these financial statements.Page 10

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)REGISTERED NUMBER: 06981121 BALANCE SHEETAS AT 31 MARCH 202120212020Note££Fixed assets Intangible assets 14 9,57714,364Tangible assets 15 1,5112,180 11,08816,544Current assets Debtors 16 11,91519,691Cash at bank and in hand 95,24398,194 107,158117,885Creditors: amounts falling due within oneyear 17 (8,749)(6,145)Total net assets 109,497 128,284Charity funds Restricted funds 18 82,196111,736Unrestricted funds 18 27,30116,548Total funds 109,497 128,284The company was entitled 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 withsection 476 of Companies Act 2006.The Trustees acknowledge their responsibilities for complying with the requirements of the Act with respect toaccounting records and preparation of financial statements.The financial statements have been prepared in accordance with the provisions applicable to entities subject tothe small companies regime.The financial statements were approved and authorised for issue by the Trustees on_________________________________________________ and signed on their behalf by:Nicholas JonesTrusteeThe notes on pages 12 to 30 form part of these financial statements.Page 11

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 20211.General information1.1 Company StatusThe 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 company's 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.2.Accounting policies 2.1Basis of preparation of financial statementsThe financial statements have been prepared in accordance with the Charities SORP (FRS 102) -Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charitiespreparing their accounts in accordance with the Financial Reporting Standard applicable in the UKand Republic of Ireland (FRS 102) (effective 1 January 2015), the Financial Reporting Standardapplicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006.Association for Glycogen Storage Disease (UK) Limited meets the definition of a public benefit entityunder FRS 102. Assets and liabilities are initially recognised at historical cost or transaction valueunless otherwise stated in the relevant accounting policy. 2.2Going concernThe trustees have a reasonable expectation that the company has adequate resources to continue inoperational existence for the foreseeable future. They continue to believe the going concern basis ofaccounting appropriate in preparing the annual financial statements. 2.3IncomeAll income is recognised once the company has entitlement to the income, it is probable that theincome 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 isrecognised at the time of the donation.Income tax recoverable in relation to investment income is recognised at the time the investmentincome is receivable. 2.4ExpenditureExpenditure is recognised once there is a legal or constructive obligation to transfer economic benefitto a third party, it is probable that a transfer of economic benefits will be required in settlement andthe amount of the obligation can be measured reliably. Expenditure is classified by activity. The costsof each activity are made up of the total of direct costs and shared costs, including support costsinvolved in undertaking each activity. Direct costs attributable to a single activity are allocated directlyto that activity. Shared costs which contribute to more than one activity and support costs which arenot attributable to a single activity are apportioned between those activities on a basis consistent withthe use of resources. Central staff costs are allocated on the basis of time spent, and depreciationcharges allocated on the portion of the asset’s use.Page 12

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 20212.Accounting policies (continued)2.4Expenditure (continued)Grants payable are charged in the year when the offer is made except in those cases where the offeris conditional, such grants being recognised as expenditure when the conditions attaching arefulfilled. Grants offered subject to conditions which have not been met at the year end are noted as acommitment, but not accrued as expenditure.Support costs are those costs incurred directly in support of expenditure on the objects of thecompany. Governance costs are those incurred in connection with administration of the company andcompliance with constitutional and statutory requirements. Costs of generating funds are costs incurred in attracting voluntary income, and those incurred intrading activities that raise funds.Charitable activities and Governance costs are costs incurred in the company's educationaloperations, including support costs and costs relating to the governance of the company apportionedto charitable activities. 2.5Cash flowThe company has taken advantage of the exemption in Financial Reporting Standard No.1 from therequirement to produce a cash flow statement on the grounds that it is a small charitable company. 2.6Intangible assets and amortisationIntangible assets costing £500 or more are capitalised and recognised when future economicbenefits 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 cost model, intangibleassets are measured at cost less any accumulated amortisation and any accumulated impairmentlosses.Amortisation is provided on intangible assets at rates calculated to write off the cost of each asset ona straight-line basis over its expected useful life. The estimated useful lives are as follows: Amortisation is provided on the following basis:Website development-20%straight linePage 13

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 20212.Accounting policies (continued) 2.7Tangible fixed assets and depreciationA review for impairment of a fixed asset is carried out if events or changes in circumstances indicatethat the carrying value of any fixed asset may not be recoverable. Shortfalls between the carryingvalue of fixed assets and their recoverable amounts are recognised as impairments. Impairmentlosses are recognised in the Statement of Financial Activities incorporating income and expenditureaccount.Tangible fixed assets are initially recognised at cost net of accumulated depreciation and anyaccumulated impairment losses. All costs incurred to bring a tangible fixed asset into its intendedworking 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 valueover their estimated useful lives, on a reducing balance basis.Depreciation is provided on the following basis:Office equipment-25% reducing balance 2.8Financial instrumentsDebtorsShort term debtors are measured at transaction price, less any impairment.CreditorsShort term trade creditors are measured at transaction price.CashCash is represented by cash in hand and deposits with financial institutions repayable without penaltyon notice of not more than 24 hours.There are no complex financial instruments. 2.9PensionsThe pension costs charges in the financial statements comprise contributions payable by the Charityduring the year for a defined contribution personal pension plan for staff. The Charity contributes 1%of eligible pay for those employees enrolled in the plan. 2.10Fund accountingGeneral funds are unrestricted funds which are available for use at the discretion of the Trustees infurtherance of the general objectives of the company and which have not been designated for otherpurposes.Restricted funds are funds which are to be used in accordance with specific restrictions imposed bydonors or which have been raised by the company for particular purposes. The costs of raising andadministering such funds are charged against the specific fund. The aim and use of each restrictedfund is set out in the notes to the financial statements.Page 14

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 20212.Accounting policies (continued) 2.11Role of VolunteersThe charity relies on the efforts of its volunteers. The value of these volunteers is not incorporatedwithin the accounts.3.Critical accounting estimates and areas of judgmentEstimates and judgments are continually evaluated and are based on historical experience and otherfactors, including expectations of future events that are believed to be reasonable under thecircumstances.Critical areas of judgment:(i) Donations of consulting by Andrew Wakelin(ii) Donations of conference guest speakers(iii) Donations of services including printing, graphic design, meeting rooms and consultant attendance of eventsIn accordance with the Charities SORP FRS 102, the charity has valued the benefit it receives fromdonated services as £53,416 (2020: £47,540). This is based on the open market value of benefitsreceived.Page 15

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 20214.Income from donations and legaciesRestrictedfunds2021Unrestrictedfunds2021Totalfunds2021Totalfunds2020 £ £ £ £ Donations9707,7818,75110,155 Legacies---93 Grants20,61820,19040,808125,824 Donations in kind4,20649,21053,41647,540 Gift aid-2,6072,6071,384 25,794 79,788 105,582184,996Total 2020132,783 52,213184,9965.Income from other trading activitiesIncome from fundraising eventsRestrictedfunds2021Unrestrictedfunds2021Totalfunds2021Totalfunds2020 £ £ £ £Fundraising events 1,716 11,739 13,455 10,251 Total 20201110,24010,251Page 16

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202110.Analysis of expenditure by activities (continued)Analysis of direct costsTotalfunds2021Totalfunds2020 £ £Conference5,91426,269 Walking course-5,395 Consultancy51,91639,540 Travel and accommodation expenses-10,059 Staff costs36,20034,241 94,030 115,504Analysis of support costsTotalfunds2021Totalfunds2020 £ £Rent3123,019 Office costs2,6228,556 Online services396644 Website and computer costs10,17611,110 Sundry expenses2,4183,709 Subscriptions352197 Insurance815675 Printing, post and stationery5,5957,540 Fundraising278- Currency gains/losses246(314) Depreciation - office equipment669726 Amortisation - website development4,7874,787 Accountancy & payroll11,2647,922 Independent examiners fee2,4192,321 Staff costs79745,636 43,14696,528Page 20

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202110.Analysis of expenditure by activities (continued)Analysis of support costs (continued)During the year ended 31 March 2021, the company incurred the following Governance costs:£13,683 (2020 - £10,405) included within the table above.11.Independent examiner's remunerationThe independent examiner's remuneration amounts to an independent examiner fee of £2,419 (2020 -£2,321).12.Staff costs20212020££Wages and salaries36,20074,741Social security costs-3,925Pension costs7971,21136,99779,877The average number of persons employed by the company during the year was as follows:20212020No.No.1 2The key management personnel of the charity are the Trustees and Development Director. Totalemployee benefits of key management personnel of the charity were £NIL (2020: £34,318).No employee received remuneration amounting to more than £60,000 in either year.13.Trustees' remuneration and expensesDuring the year, no Trustees received any remuneration or other benefits (2020 - £NIL).During the year ended 31 March 2021, no Trustee expenses have been incurred (2020 - £NIL).Page 21

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202118.Statement of fundsStatement of funds - current yearBalance at 1April 2020£Income£Expenditure£Balance at31 March2021£Unrestricted fundsGeneral Funds - all funds 16,548 94,250 (83,497) 27,301 Restricted fundsType 2 Pompe14,6551,905(2,820)13,740 Type 5 Mcardle11,8461,749(1,410)12,185 Type 3 Cori3,528-(50)3,478 Type 1 Van Gierke12,381--12,381 Type 6 Hers Fund602--602 Hardship Fund115-(100)15 Conferences12,7425,706(7,490)10,958 Medical Advisory Board2,065--2,065 Specialist Care Advisor25,44510,701(32,556)3,590 Type 0165--165 Patient Education and Empowerment28,1928,570(13,745)23,017 111,73628,631(58,171)82,196Total of funds128,284 122,881 (141,668) 109,497Page 25

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202118.Statement of funds (continued)Statement of funds - prior yearBalance at1 April 2019£Income£Expenditure£Transfersin/out£Balance at31 March2020£Unrestricted fundsGeneral Funds - all funds39,72668,043 (92,999)1,77816,548 Restricted fundsType 2 Pompe13,8204,314(3,479)-14,655 Type 5 Mcardle15,69410,088(13,936)-11,846 Type 3 Cori3,379583(434)-3,528 Type 1 Van Gierke10,0965,000(2,715)-12,381 Type 6 Hers Fund602---602 Hardship Fund815-(700)-115 Conferences13,01644,819(45,093)-12,742 Medical Advisory Board2,065---2,065 Specialist Care Advisor13,47961,111(49,145)-25,445 Type 0165---165 Patient Education andEmpowerment26,75911,844(8,633)(1,778)28,192 99,890137,759(124,135)(1,778)111,736Total of funds139,616137,759 (217,134) - 128,284Page 26

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202119.Summary of fundsSummary of funds - current yearBalance at 1April 2020£ Income£ Expenditure£ Balance at31 March2021£ General funds16,54894,250(83,497)27,301 Restricted funds111,73628,631(58,171)82,196 128,284 122,881 (141,668) 109,497Summary of funds - prior yearBalance at1 April 2019£ Income£ Expenditure£ Transfersin/out£ Balance at31 March2020£ General funds39,72668,043(92,999)1,77816,548 Restricted funds99,890137,759(124,135)(1,778)111,736 139,616205,802 (217,134) - 128,284Page 27

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202119.Summary of funds (continued)Restricted FundsType 2 Pompe's Supporting GSD Type 2, Pompe.Type 5 McArdlesSupporting GSD Type 5, McArdle.Type 3 CoriSupporting GSD Type 3, Cori.Type 1 Von GierkeSupporting GSD Type 1, Von Gierke.Type 6 Hers FundSupporting GSD Type 6, Hers.Hardship FundSupporting patients and families suffering hardship.ConferencesSupporting AGSD-UK Annual conference.Medical Advisory BoardSupporting meetings of AGSD-UK Medical Advisors.Specialist Care AdvisorSupporting the provision of a Pompe patient support worker.Type 0 Supporting GSD Type 0.Patient Education and EmpowermentSupporting patients and families by providing family days.Transfer between fundsThe transfer in 2020 out of the Patient Education and Empowerment Fund represents event costsmisallocated to general funds in prior years. These amounts have been transferred to unrestrictedfunds.Page 28

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202120.Analysis of net assets between fundsAnalysis of net assets between funds - current yearRestrictedfunds2021Unrestrictedfunds2021Totalfunds2021 £ £ £Tangible fixed assets-1,5111,511Intangible fixed assets-9,5779,577Current assets83,15524,003107,158Creditors due within one year(959)(7,790)(8,749)Total 82,196 27,301 109,497Analysis of net assets between funds - prior yearRestrictedfunds2020Unrestrictedfunds2020Totalfunds2020 £ £ £Tangible fixed assets-2,1802,180Intangible fixed assets-14,36414,364Current assets112,1905,695117,885Creditors due within one year(454)(5,691)(6,145)Total 111,73616,548128,284Page 29

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ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED(A company limited by guarantee) NOTES TO THE FINANCIAL STATEMENTSFOR THE YEAR ENDED 31 MARCH 202121.Pension commitmentsThe Charity operates a defined contribution pension scheme. The assets of the scheme are heldseparately from those of the Charity in independently administered funds. The pension cost shown in note12 represents the contributions payable by the Charity to these funds.22.Operating lease commitmentsAt 31 March 2021 the company had commitments to make future minimum lease payments under non-cancellable operating leases as follows:20212020££Land and buildingsNot later than 1 year- 31223.Related party transactionsThere were no related party transactions in the year ended 31 March 2021.Page 30