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2023-03-31-accounts

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:

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:

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:

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

Page 14

ASSOCIATION FOR GLYCOGEN STORAGE DISEASE (UK) LIMITED (A company limited by guarantee)

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 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:

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

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