**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 2023**
## **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**|1|
|**Trustees' report**|2 - 9|
|**Independent examiner's report**|10|
|**Statement of financial activities**|11|
|**Balance sheet**|12|
|**Notes to the financial statements**|13 - 31|
## **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 2023**
## **Trustees**
Jayesh Pindolia (resigned 4 April 2022) Nicholas Jones Ailsa Arthur Sarah Chikhani Rachel Thomas Dr Florence Osborne Dr Charlotte Dawson (appointed 15 January 2023) Kempton Rees (appointed 15 January 2023)
## **Company registered number**
06981121
## **Charity registered number**
1132271
## **Registered office**
Black Country House, Rounds Green Road, Oldbury, West Midlands, B69 2DG
## **Independent examiner**
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 2023**
The Trustees present their annual report together with the financial statements of the company for the 1 April 2022 to 31 March 2023. The Annual report serves the purposes of both a Trustees' report and a directors' report under company law. The Trustees confirm that the Annual report and financial statements of the charitable company comply with the current statutory requirements, the requirements of the charitable company's 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) as amended by Update Bulletin 2 (effective 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 two 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 concerned 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 2023**
## **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 performance**
## **a. Review of activities**
The 2022-23 financial year began with work to finalise our new strategy. This is framed around the priorities identified by people affected by GSDs, through community research and a listening exercise. The resulting themes and goals 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 service access.
A further cross-cutting theme and goal focused on organisational development was also agreed to strengthen our ability to achieve these aims:
Theme: Strong and effective organisation.
Goal: AGSD-UK will grow sustainably, with robust governance, to increase our impact.
The strategy is underpinned by a three-year work programme, with clear progress and outcome measures to monitor our delivery and impact. The remainder of the year was focused on getting this programme underway.
## **Support across the community**
During the year the lifting of Covid restrictions meant we were able to begin staging in-person as well as online community activities for people affected by the different types of GSD. These included in person Pompe events in Birmingham and Swansea plus an online Pompe research seminar and an online research seminar and an inperson event for those living with hepatic GSDs in Staffordshire. For people affected by McArdle's and other muscle GSDs there were online meetings for adults and for younger people and parents, as well as walking courses in Wiltshire and Pembrokeshire, with an additional families and children walking course. These events were hugely popular and provided crucial access to peer support. The easing of Covid restrictions also meant we were able to re-establish face to face support sessions in some specialist clinics.
Overall feedback received included the following:
"I have enjoyed meeting up with old friends and new ones. It is invigorating to have things in common with other people and not feel an odd one out. There was much cheerfulness in the room it gave me a happy feeling, very welcome after the last few years..."
Page 3
## **ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2023**
## **Achievements and performance (continued)**
"Thank you for yesterday’s wonderful event. I was so happy to be able to come along with my mother to meet with other people with similar situations and to meet the lovely staff!... Coming along yesterday was great because everyone understood and was empathetic towards me and my mother. Was great to not have to explain my condition."
"I attended the online meeting yesterday and I’d like to say that I found it very informative. Many thanks to the organisers and presenters. The mRNA treatment for GSD3 looks very exciting in that it potentially will help other types of GSD too."
"The event was absolutely a delight and I met people who I already have a connection with. We all have Pompe - that's our connection. We don't need to say much but we understand the language of Pompe. It's so refreshing to have these get-togethers. I really appreciate AGSD-UK who organise and pay for these events."
## **Help with living well**
Throughout the year, wide-ranging help with living well was provided by our care and welfare advisor services. Support offered spanned issues such as:
- Employment and adjustments at work
- Bereavement
- Bullying
- Legal aid
- Visa and immigration issues
- Community transport and blue badge access
- Special educational needs support
- Getting a diagnosis
- Challenging behavioural issues
- Housing and home adaptations
- Emotional support
- Medical equipment
This involved close working with multiple agencies, including social services, education, health, family support charities, housing and employers.
Advice and support was also offered in relation to financial wellbeing, including support to make successful claims for benefits such as employment and support allowance, personal independence payment, carers’ allowance and disability living allowance, as well as help with securing food vouchers, food bank access, grants for domestic bills and holiday grants.
In addition we established a community support fund which enabled access to equipment and provided travel costs for low income families to AGSD-UK events.
Reported outcomes included:
- Improved wellbeing following transition to more supportive school environment
- • Less worry about money
- Feeling more confidence and assured that support was available
- Increased teaching assistant support
- Improved social care package
- Improved housing situation
- Securing respite care
Page 4
## **ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2023**
## **Achievements and performance (continued)**
The following comments are typical of the universally positive feedback received:
• “I was recently diagnosed with Late Onset Pompe Disease, which has come as a huge shock to me. I am struggling daily to come to terms with both my physical and mental symptoms. I desperately needed help and guidance and...AGSD have been absolutely wonderful in supporting me at this really difficult time with both practical and emotional support...”
• “I appreciate the incredible work that you do at AGSD for people like myself. You give hope when it feels like there’s none left and the strength to fight when it’s so easy to just give up! The work that you guys do, going above and beyond to get justice for people that have been let down continuously is applaudable. Thank you for making us feel that we are not alone. Thank you for your care and compassion.”
• "As a result of your continuous support, I will now be receiving the enhanced mobility payment; this will help me greatly."
• “Just wanted to say a big thank you for your guidance about finding work...I was struggling to find a suitable position and was starting to feel unemployable. As a result I secured myself a position with a company that accepted my situation and it’s given me a boost to my confidence being back in employment.”
Alongside our advisory services, our regular magazine Glisten continued to reach over 1500 people, sharing latest updates on research and managing the condition, together with personal experiences and practical tips. Meanwhile our website hosting information on all GSDs and signposting further support was visited 42,948 times.
## **Better treatments and service access**
Over the course of the year the charity was involved in building the evidence base around GSDs, helping to recruit community members for a range of studies looking at the experience of people affected by different variants and gaining feedback from people living with the condition to help shape study design and information for research participants.
Having contributed to the National Institute for Health and Care Excellence’ review of avalglucosidae alfa for treatment of people affected by Pompe, AGSD-UK gathered and submitted further evidence for the NICE appraisal of cipaglucosidase alfa with miglustat and nominated and supported a patient expert to contribute to the review. Given the varying responses to therapy among people affected, we are pleased that, following recommendations by NICE, both of these additional Pompe treatment options are now being made available to community members.
We also continued to convene meetings of specialist professionals to enable them to share expertise and work together to improve management of the condition and collaborated with other rare condition organisation to press for early diagnosis and better treatment and services.
## **Strong and effective organisation**
During the year we were pleased to welcome two new trustees - Dr Charlotte Dawson and Kempton Rees, bringing experience and expertise in key areas identified by our trustee skills audit.
We began the process of benchmarking our organisation against recognised charity standards, in order to identify ways to strengthen our governance and performance.
Page 5
## **ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2023**
## **Achievements and performance (continued)**
Meanwhile, working remotely our through our small team, we continued to manage costs carefully, whilst offering more face to face support and events as we emerged from Covid. As always, we were extremely grateful for the support of our dedicated volunteers who bring considerable extra capacity to our activities.
## **Finance, fundraising and future plans**
Moving forward we will continue with delivery of our three year plan, in support of our strategy goals. In addition to our core services, planned activities for the period April 2023-March 2024 include; staging a full scale weekend community event, developing an online self management programme and establishing access to a range of therapeutic activities online.
We will continue to pursue additional funding to support these activities, with a focus on increased community fundraising, as well as expanding valued grant income from trusts and industry partners.
Our gratitude goes to all those committed individuals and organisational partners who have supported our work though their fundraising and charitable donations over the year, including Amicus, Astellas, Albert Hunt Trust, Beam, Sanofi Genzyme, Spark Therapeutics, Ultragenyx and Vitaflo. Their ongoing support is crucial in enabling us to deliver the priorities identified by people living with this extremely complex and challenging condition and is very much appreciated.
## **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 £24,159 which is an increase from the previous year (£23,462). The trustees’ future focus will be on increasing income while tightly managing costs. The total restricted funds is now £59,194 (2022: £72,936).
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 25% 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 £1,014. Our free reserves at 31 March 2023 are therefore £23,145.
Page 6
## **ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2023**
## **c. Investment policy and performance**
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.
## **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 05/08/2009 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 and/or 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.
## **c. 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 Types, 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 Co-ordinators 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 2023**
**Structure, governance and management (continued)**
## **e. Financial risk management**
The Trustees 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 finance as follows:
Income generation Cost control Banking control I.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.
Page 8
## **ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED**
## **(A company limited by guarantee)**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2023**
## **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 Practice).
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 statements 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 company's 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 irregularities.
Approved by order of the members of the board of Trustees on _________________________________________________21 December 2023 and signed on their behalf by:
**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 2023**
## **Independent 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 March 2023.
## **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 company's 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 Examiner's Statement**
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination 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; or
2. the accounts do not accord with those records; or
3. 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
4. the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice 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 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's Trustees those matters I 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 accept or assume responsibility to anyone other than the company and the company's Trustees as a body, for my work or for this report.
Signed: Dated: 22 December 2023 Kerry Brown FCA
**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 2023**
|**Note**
**Income from:**
Donations and legacies
4
Other trading activities
5
Investments
6
Other income
7
**Total income**
**Expenditure on:**
Charitable activities
**Total expenditure**
**Net (expenditure)/income**
Transfers between funds
17
**Net movement in funds**
**Reconciliation of funds:**
Total funds brought forward
**Total funds carried forward**|**Restricted**
**funds**
**2023**
**£**
**63,879**
**4,614**
**-**
**-**
**68,493**
**83,674**
**83,674**
**(15,181)**
**1,439**
**(13,742)**
**72,936**
**59,194**|**Unrestricted**
**funds**
**2023**
**£**
**63,076**
**11,371**
**451**
**325**
**75,223**
**73,087**
**73,087**
**2,136**
**(1,439)**
**697**
**23,462**
**24,159**|**Total**
**funds**
**2023**
**£**
**126,955**
**15,985**
**451**
**325**
**143,716**
**156,761**
**156,761**
**(13,045)**
**-**
**(13,045)**
**96,398**
**83,353**|_Total_
_funds_
_2022_
_£_
_107,280_
_17,455_
_14_
_7,000_
_131,749_
_144,848_
_144,848_
_(13,099)_
_-_
_(13,099)_
_109,497_
_96,398_|
|---|---|---|---|---|
The Statement of Financial Activities includes all gains and losses recognised in the year.
The notes on pages 13 to 31 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 2023**
|**Note**
**Fixed assets**
Intangible assets
13
Tangible assets
14
**Current assets**
Debtors
15
Cash at bank and in hand
Creditors: amounts falling due within one
year
16
**Total net assets**
**Charity funds**
Restricted funds
17
Unrestricted funds
17
**Total funds**|**6,865**
**81,619**
**88,484**
**(6,145)**|**2023**
**£**
**-**
**1,014**
**1,014**
**83,353**
**59,194**
**24,159**
**83,353**|_5,771_
_89,950_
_95,721_
_(5,245)_|_2022_
_£_
_4,789_
_1,133_|
|---|---|---|---|---|
|||||_5,922_|
|||||_96,398_|
|||||_72,936_
_23,462_|
|||||_96,398_|
The 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 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 Trustees on _________________________________________________21 December 2023 and signed on their behalf by:
## **Dr Florence Osborne**
Chair
The notes on pages 13 to 31 form part 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 2023**
## **1. 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 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**
## **2.1 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, including 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 2023**
## **2. Accounting policies (continued)**
## **2.4 Expenditure (continued)**
Expenditure on charitable activities is incurred on directly undertaking the activities which further the company's 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 company's 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 % straight line
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## **ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2023**
## **2. 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. All 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 25% reducing balance
## **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 price.
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 1% 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 2023**
## **2. 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.
## **3. 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:
(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 events
In accordance with the Charities SORP FRS 102, the charity has valued the benefit it receives from donated services as £59,396 _(2022: £57,225)._ This is based on the open market value of benefits received.
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 2023**
## **4. Income from donations and legacies**
|Donations
Grants
Donations in kind
Gift aid
**Total 2023**
_Total 2022_|**Restricted**
**funds**
**2023**
**Unrestricted**
**funds**
**2023**
**£**
**£**
367
6,430
48,500
11,000
15,012
44,384
-
1,262
63,879
63,076
_38,889_
_68,391_|**Total**
**funds**
**2023**
**£**
**6,797**
**59,500**
**59,396**
**1,262**
**126,955**
_107,280_|_Total_
_funds_
_2022_
_£_
_5,754_
_40,914_
_57,225_
_3,387_
_107,280_|
|---|---|---|---|
|||||
## **5. Income from other trading activities**
## **Income from fundraising events**
|Fundraising events
_Total 2022_|**Restricted**
**funds**
**2023**
**Unrestricted**
**funds**
**2023**
**£**
**£**
4,594
10,551
_1,185_
_15,253_|**Total**
**funds**
**2023**
**£**
**15,145**
_16,438_|_Total_
_funds_
_2022_
_£_
_16,438_|
|---|---|---|---|
|||||
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 2023**
## **5. Income from other trading activities (continued)**
## **Income from non charitable trading activities**
|Subscriptions
Book Sales
**Total 2023**
_Total 2022_|**Restricted**
**funds**
**2023**
**Unrestricted**
**funds**
**2023**
**£**
**£**
-
800
20
20
20
820
_66_
_951_|**Total**
**funds**
**2023**
**£**
**800**
**40**
**840**
_1,017_|_Total_
_funds_
_2022_
_£_
_945_
_72_
_1,017_|
|---|---|---|---|
|||||
## **6. Investment income**
|**Unrestricted**
**funds**
**2023**
**£**
Investment income
451
_Total 2022_
_14_|**Total**
**funds**
**2023**
**£**
**451**
_14_|_Total_
_funds_
_2022_
_£_
_14_|
|---|---|---|
||||
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 2023**
## **7. Other incoming resources**
|Other income
_Total 2022_|**Restricted**
**funds**
**2023**
**£**
-
_7,000_|**Unrestricted**
**funds**
**2023**
**£**
325
_-_|**Total**
**funds**
**2023**
**£**
**325**
_7,000_|_Total_
_funds_
_2022_
_£_
_7,000_|
|---|---|---|---|---|
||||||
## **8. Analysis of grants**
|Grants
_Total 2022_|**Grants**
**2023**
**£**
273
_1,090_|**Total**
**funds**
**2023**
**£**
**273**
_1,090_|_Total_
_funds_
_2022_
_£_
_1,090_|
|---|---|---|---|
|||||
In 2023 no grants were given to institutions _(2022: 0)_ and 2 to individuals _(2022: 5)._
## **9. Analysis of expenditure by activities**
|Charitable activities
_Total 2022_|**Activities**
**undertaken**
**directly**
**2023**
**£**
123,205
_96,930_|**Grant**
**funding of**
**activities**
**2023**
**£**
273
_1,090_|**Support**
**costs**
**2023**
**£**
33,283
_46,828_|**Total**
**funds**
**2023**
**£**
**156,761**
_144,848_|_Total_
_funds_
_2022_
_£_
_144,848_|
|---|---|---|---|---|---|
|||||||
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 2023**
## **9. Analysis of expenditure by activities (continued)**
## **Analysis of direct costs**
|Walking course
Consultancy
Travel and accommodation expenses
Staff costs
Freelancer consulting costs
Patient and Family meetings|**Total**
**funds**
**2023**
**£**
**6,709**
**59,396**
**3,095**
**22,408**
**29,434**
**2,163**
**123,205**|_Total_
_funds_
_2022_
_£_
_-_
_56,725_
_277_
_14,273_
_25,655_
_-_
_96,930_|
|---|---|---|
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 2023**
## **9. Analysis of expenditure by activities (continued)**
## **Analysis of support costs**
|Rent
Office costs
Online services
Website and computer costs
Sundry expenses
Subscriptions
Insurance
Printing, post and stationery
Fundraising
Depreciation - office equipment
Amortisation - website development
Accountancy & payroll
Consultancy
Staff training
Independent examiners fee
Staff costs
**Total 2023**|**Total**
**funds**
**2023**
**£**
**312**
**396**
**968**
**8,628**
**-**
**138**
**717**
**1,578**
**(43)**
**288**
**4,789**
**9,827**
**-**
**787**
**2,773**
**2,125**
**33,283**|_Total_
_funds_
_2022_
_£_
_312_
_3,316_
_493_
_9,827_
_65_
_174_
_793_
_4,173_
_369_
_378_
_4,787_
_7,193_
_6,500_
_-_
_2,593_
_5,855_
_46,828_|
|---|---|---|
During the year ended 31 March 2023, the company incurred the following Governance costs:
£12,600 (2022 - £9,786) included within the table above.
## **10. Independent examiner's remuneration**
The independent examiner's remuneration amounts to an independent examiner fee of £2,773 ( _2022_ - _£2,593_ ).
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 2023**
## **11. Staff costs**
|**2023**
**£**
Wages and salaries
**24,000**
Pension costs
**533**
**24,533**
The average number of persons employed by the company during the year was as follows:
**2023**
**No.**
**1**|_2022_
_£_
_19,777_
_351_|
|---|---|
||_20,128_|
||_2022_
_No._
_1_|
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 ( _2022: £14,801)_ .
No employee received remuneration amounting to more than £60,000 in either year.
## **12. Trustees' remuneration and expenses**
During the year, no Trustees received any remuneration or other benefits _(2022 - £NIL)_ .
During the year ended 31 March 2023, expenses totalling _£_ 938 were reimbursed or paid directly to 2 Trustees _(2022 - £562 to_ 1 _Trustees)_ to cover expenses incurred relating to postage and a walking course.
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 2023**|**Website**
**developmen**
**t**
**£**
**23,938**
**23,938**
**19,149**
**4,789**
**23,938**
**-**
_4,789_|
|---|---|
|**13.**
**Intangible assets**
**Cost**
At 1 April 2022
At 31 March 2023
**Amortisation**
At 1 April 2022
Charge for the year
At 31 March 2023
**Net book value**
At 31 March 2023
_At 31 March 2022_||
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 2023**
## **14. Tangible fixed assets**
|**Cost or valuation**
At 1 April 2022
Additions
At 31 March 2023
**Depreciation**
At 1 April 2022
Charge for the year
At 31 March 2023
**Net book value**
At 31 March 2023
_At 31 March 2022_|**Office**
**equipment**
**£**
**7,369**
**169**|
|---|---|
||**7,538**|
||**6,236**
**288**|
||**6,524**|
||**1,014**|
||_1,133_|
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 2023**
## **15. Debtors**
|**Due within one year**
Trade debtors
Other debtors
Prepayments and accrued income|**2023**
**£**
**5,674**
**50**
**1,141**
**6,865**|_2022_
_£_
_5,002_
_50_
_719_|
|---|---|---|
|||_5,771_|
## **16. Creditors: Amounts falling due within one year**
|Other creditors
Accruals and deferred income|**2023**
**£**
**2,474**
**3,671**
**6,145**|_2022_
_£_
_1,266_
_3,979_|
|---|---|---|
|||_5,245_|
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 2023**
## **17. Statement of funds**
## **Statement of funds - current year**
|**Unrestricted funds**
General Funds - all funds
**Restricted funds**
Type 2 Pompe
Type 5 Mcardle
Type 3 Cori
Type 1 Van Gierke
Type 6 Hers Fund
Conferences
Medical Advisory Board
Specialist Care Advisor
Type 0
Patient Education and
Empowerment
Better treatments and service
access
Help with living well
Support across the community
**Total of funds**|**Balance at 1**
**April 2022**
**£**
**23,462**
**11,876**
**10,858**
**3,920**
**18,387**
**602**
**23,305**
**2,065**
**1,067**
**165**
**691**
**-**
**-**
**-**
**72,936**
**96,398**|**Income**
**£**
**75,223**
**-**
**15,376**
**-**
**-**
**-**
**2,500**
**-**
**-**
**-**
**4,617**
**13,833**
**16,833**
**15,334**
**68,493**
**143,716**|**Expenditure**
**£**
**(73,087)**
**(4,582)**
**(17,706)**
**(611)**
**(855)**
**-**
**(4,474)**
**(2,065)**
**(1,067)**
**-**
**(5,308)**
**(13,833)**
**(18,272)**
**(14,901)**
**(83,674)**
**(156,761)**|**Transfers**
**in/out**
**£**
**(1,439)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**1,439**
**-**
**1,439**
**-**|**Balance at**
**31 March**
**2023**
**£**
**24,159**|
|---|---|---|---|---|---|
||||||**7,294**
**8,528**
**3,309**
**17,532**
**602**
**21,331**
**-**
**-**
**165**
**-**
**-**
**-**
**433**
**59,194**|
||||||**83,353**|
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 2023**
## **17. Statement of funds (continued)**
## **Statement of funds - prior year**
|**Unrestricted funds**
General Funds - all funds
**Restricted funds**
Type 2 Pompe
Type 5 Mcardle
Type 3 Cori
Type 1 Van Gierke
Type 6 Hers Fund
Hardship Fund
Conferences
Medical Advisory Board
Specialist Care Advisor
Type 0
Patient Education and
Empowerment
**Total of funds**|_Balance at_
_1 April 2021_
_£_
_27,301_
_13,740_
_12,185_
_3,478_
_12,381_
_602_
_15_
_10,958_
_2,065_
_3,590_
_165_
_23,017_
_82,196_
_109,497_|_Income_
_£_
_84,609_
_95_
_1,693_
_442_
_6,006_
_-_
_-_
_22,440_
_-_
_15,064_
_-_
_1,400_
_47,140_
_131,749_|_Expenditure_
_£_
_(88,213)_
_(1,959)_
_(3,020)_
_-_
_-_
_-_
_(250)_
_(10,093)_
_-_
_(17,587)_
_-_
_(23,726)_
_(56,635)_
_(144,848)_|_Transfers_
_in/out_
_£_
_(235)_
_-_
_-_
_-_
_-_
_-_
_235_
_-_
_-_
_-_
_-_
_-_
_235_
_-_|_Balance at_
_31 March_
_2022_
_£_
_23,462_|
|---|---|---|---|---|---|
||||||_11,876_
_10,858_
_3,920_
_18,387_
_602_
_-_
_23,305_
_2,065_
_1,067_
_165_
_691_
_72,936_|
||||||_96,398_|
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 2023**
## **18. Summary of funds**
## **Summary of funds - current year**
|General funds
Restricted funds|**Balance at 1**
**April 2022**
**£**
**23,462**
**72,936**
**96,398**
_Balance at_
_1 April 2021_
_£_
_27,301_
_82,196_
_109,497_|**Income**
**£**
**75,223**
**68,493**
**143,716**
_Income_
_£_
_84,609_
_47,140_
_131,749_|**Expenditure**
**£**
**(73,087)**
**(83,674)**
**(156,761)**
_Expenditure_
_£_
_(88,213)_
_(56,635)_
_(144,848)_|**Transfers**
**in/out**
**£**
**(1,439)**
**1,439**
**-**
_Transfers_
_in/out_
_£_
_(235)_
_235_
_-_|**Balance at**
**31 March**
**2023**
**£**
**24,159**
**59,194**
**83,353**|
|---|---|---|---|---|---|
||||||_Balance at_
_31 March_
_2022_
_£_
_23,462_
_72,936_
_96,398_|
|**Summary of funds - prior year**||||||
|General funds
Restricted funds||||||
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 2023**
## **18. 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 worker.
## **Type 0**
Supporting GSD Type 0.
## **Patient Education and Empowerment**
Supporting patients and families by providing family days.
## **Better treatments and service access**
Supporting activities to promote better treatments and service access through research engagement and work with professionals and partners.
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 2023**
## **18. 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.
## **Transfers between funds**
A transfer of £1,439 was made during the year from the general fund to the Help with living well fund to cover the deficit at the year end.
## **19.**
## **Analysis of net assets between funds - current year**
|Tangible fixed assets
Current assets
Creditors due within one year
**Total**|**Restricted**
**funds**
**2023**
**Unrestricted**
**funds**
**2023**
**£**
**£**
-
1,014
60,955
27,529
(1,761)
(4,384)
59,194
24,159|**Total**
**funds**
**2023**
**£**
**1,014**
**88,484**
**(6,145)**
**83,353**|
|---|---|---|
## **Analysis of net assets between funds - prior year**
|Tangible fixed assets
Intangible fixed assets
Current assets
Creditors due within one year
**Total**|_Restricted_
_funds_
_2022_
_£_
_-_
_-_
_73,643_
_(707)_
_72,936_|_Unrestricted_
_funds_
_2022_
_£_
_1,133_
_4,789_
_22,078_
_(4,538)_
_23,462_|_Total_
_funds_
_2022_
_£_
_1,133_
_4,789_
_95,721_
_(5,245)_
_96,398_|
|---|---|---|---|
Page 30
## **ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2023**
## **20. Pension commitments**
The Charity operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the Charity in independently 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 £107 (2022 - £107) which relates to the pension fund.
## **21. Related party transactions**
There were no related party transactions in the year ended 31 March 2023.
Page 31