TRUSTEES' REPORT
FOR THE Period 1[st] April 2022 to 31[st] March 2023
The Trustees present their annual report together with the financial statements of the company for the period 1[st] April 2022 to 31[st] March 2023. 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 2015) as amended by Update Bulletin 2 (effective January 2019).
Objectives and activities
a. Objects
The objects of the Pompe Support Network as recorded in its CIO Constitution, are:
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TO RELIEVE SICKNESS OF CHILDREN AND ADULTS SUFFERING FROM POMPE DISEASE IN THE UNITED KINGDOM AND THROUGHOUT THE WORLD, IN PARTICULAR BUT NOT EXCLUSIVELY BY: (A) CONTRIBUTING TO THE ADVANCEMENT OF QUALITY RESEARCH & EDUCATION IN RESPECT OF POMPE DISEASE; AND (B) PROVIDING INFORMATION, ADVICE AND SUPPORT TO SUCH INDIVIDUALS, THEIR FAMILIES AND CARERS BY SUCH MEANS AS THE TRUSTEES MAY DETERMINE
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TO RELIEVE THE NEEDS OF BEREAVED FAMILIES WHO HAVE LOST FAMILY MEMBERS TO POMPE DISEASE IN THE UNITED KINGDOM BY SUCH MEANS AS THE TRUSTEES MAY DETERMINE
The pompe support Network works to protect and promote the best interests of persons living with Pompe disease.
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 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 Pompe Support Network (PSN) acts as a vehicle of communication on Pompe Disease related matters by publishing and distributing relevant material. It contributes to the
advancement of treatments and cures through supporting research, studies, and trials. It acts as a focus for educational, scientific, and charitable activities related to Pompe disease. The PSN networks closely with other national and international organisations that support Pompe disease and other related conditions, including Glycogen Storage Diseases (GSDs), Lysosomal Storage Disease (LSDs) and neuromuscular diseases (NMDs).
c. Activities undertaken to achieve objectives
The main activities are the support of patients and families; the organising of online or faceto-face meetings to promote the understanding of Pompe disease; the publication of a regular newsletter; the provision of information about Pompe Disease through publications, video, and audio media, and through our web site and social media. PSN also provides grants to research bodies and individuals. These activities support the objects by assisting people living with Pompe disease by encouraging and supporting research into the disease and by informing the Pompe community and by educating the medical profession and other members of the public about the disease.
d. Grant-making policies
Currently the Pompe Support Network does not have sufficient funds to provide grants to support research projects, however, the PSN does support research by applying knowledge gained and sourced from the Pompe community. The PSN does occasionally make small grants to individual applicants for personal expenses related to their disability or care, where statutory services are unable to provide equipment or reimburse health-related expenses.
Achievements and performance
a. Review of activities
Our strategic plan outlined our aims:
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Act as a focus for the UK Pompe community
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Provide appropriate and well-informed non-medical advice
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Provide accessible and clear supply of information for all stakeholders
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Provide timely information relating to new medical interventions
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Promote, support, and publish research relevant to Pompe disease
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Promote research into medical treatments and devices for Pompe disease.
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Provide independent advice relating to clinical studies for Pompe disease
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Hold a print and online library of published works pertinent to Pompe disease.
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Encourage meetings to exchange information between stakeholders.
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Promote early diagnosis of Pompe disease
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Support UK neonatal screening for Pompe disease
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Promote public awareness and understanding of Pompe disease
We have continued to make progress in all areas, some examples are listed below.
Website
Our communications manager has continued to develop and maintain the Pompe Support Network website, www.pompe.uk. It is becoming a highly valued resource containing a growing number of podcasts and videos. These are designed to both inform individuals and families with a new diagnosis of Pompe and raise awareness of the condition and its effect on peoples’ lives.
We offer social care and benefits advice through our volunteer Wayne Belfitt, a qualified social worker. Additionally, we offer a counselling service through a professional counsellor, Caroline Finill who works at Psychology Partners.
Webinars, Video and Audio projects
During this period, we recorded and published further podcasts for our Pompe Voices collection that are now available in our online library. One video was recorded to show how Virtual Reality can help those with health conditions, including Pompe Disease.
Publications
Considerable effort has been spent to develop a book created by the Pompe Community for the Pompe Community. It is a collection of activities that people undertake and shows how individuals are enjoying life. This inspiring book will be published later in 2023 and was created thanks to a grant from the National Lottery.
Fundraising
Public donations continue to be received, but no fundraising events have been organised due to covid-19 restrictions and the small return that they offer.
Grant Applications
We have once again been successful with our grant applications several biotechnology companies although several payments were received outside of our financial year and are not reported in the accounts for this financial period.
We received considerable donations-in-kind from trustees and volunteers.
Networking and collaborative working
Allan Muir is a founder member of the UK LSD Collaborative, an informal group including 8 UK charities supporting Lysosomal storage disorders, of which Pompe disease is one. The collaborative meets several times each year to discuss topics of mutual interest and to meet with healthcare professionals located at each of the NHS Highly Specialised Centres for Lysosomal storage diseases. There are 8 such centres in England, one in Wales and an Inborn Metabolic Disorder network in Scotland.
During this period Allan Muir was also vice-chair of the International Pompe Association (IPA).
Conferences and Meetings
Our Chair, Allan Muir, has attended several international meetings on behalf of the PSN and visit reports are given to the Trustees and published on the website for the benefit of Pompe community.
Allan Muir, Hulya Apaydin and Alex Jones attended the WORLD Symposium in Orlando where the charity was allocated a booth where we shared our literature and discussed our work with many delegates from around the world. Alex Jones produced a short video to showcase the importance of patient group representation at international events, such as this.
Representation to Regulatory Bodies
Pompe Support Network was again asked by the National Institute for Health and Care Excellence (NICE) to consult on applications for a new drug application for Pompe disease. The drug, Cipaglucosidase Alpha with Miglustat, is under development by Amicus Therapeutics. Allan Muir submitted the Scoping forms and attended the Scoping committee meeting on behalf of the Pompe community.
Diagnosis and Neonatal Screening
Our Chair, Allan Muir has been a member of the Patient Advocacy for Newborn Screening group for many years; that group has since morphed into the UK Newborn Screening Collaborative and Pompe Support Network is an active member of the group and its campaign to add more rare diseases to the list of conditions screened for at birth under the UK National Screening Programme.
Allan Muir has continued to represent the Pompe community on the Screen4Care advisory board; a European collaboration that has five years of funding to research designed to “Shorten the path to rare disease diagnosis by using newborn genetic screening and digital technologies”.
Research
PSN does not directly fund research, but we are looking to facilitate further studies into medical devices that could help people with Pompe disease. For example, we are continuing to explore the hypothesis that Electrical Muscle Stimulation may benefit people with Pompe, and we are exploring activities to improve the mental wellbeing of our community.
Financial review
a. Going concern
Since the foundation of the Pompe Support Network CIO, relationships with funders have grown such that the trustees believe that there will be no adverse effects on income arising from the Covid-19 pandemic. The CIO has cash resources and has no requirement for external funding. At the date of signing the accounts the unrestricted reserve stands at £16,519. The trustees have reasonable expectation that the CIO 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 CIO holds funds that are restricted in expenditure in support of individual projects. The general reserves are used to support the on-going activities of the CIO. The trustees' future focus will be on increasing income while tightly managing costs.
In line with most small charities, Pompe Support Network aims to spend most of the funds raised during any given financial year for the benefit of the UK Pompe community 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.
c. Investment policy and performance
The Pompe Support Network holds all 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 Pompe Support Network is registered with the Charity Commission as a Foundation model Charitable Incorporated Organisation (CIO). As such, the only voting members are the charity trustees. The company is constituted under its CIO Constitution dated 22[nd] September 2019 with registered charity number 1186383. The principal object of the CIO is to provide " TO RELIEVE SICKNESS OF CHILDREN AND ADULTS SUFFERING FROM POMPE DISEASE IN THE UNITED KINGDOM AND THROUGHOUT THE WORLD".
b. Methods of appointment or election of Trustees
The management of the CIO is the responsibility of the Trustees who are elected and/or coopted under the terms of the CIO Constitution. Any member of the Pompe community 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 a future meeting of Trustees.
c. Organisational structure and decision-making policies
The Pompe Support Network is a foundation model CIO; the existing trustees elect new members to 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.
The Board of Trustees delivers the strategy through staff and a small number of volunteers.
d. Pay policy for key management personnel
The company currently has one part-time member of staff, the Communications Officer. The remuneration for key management posts is benchmarked at or below market rate prior to appointment and is reviewed by Trustees annually.
e. Risk Management
The Trustees have assessed the major risks to which the CIO is exposed. The Trustees are satisfied that systems, procedures and plans are in place to mitigate exposure to major risks.
Trustees serving during this period
The following individuals served on the board of trustees:
| Allan David John Muir | Chair |
|---|---|
| Kevin William Annesley | Trustee |
| Barbara Jane Muir | Trustee | |
|---|---|---|
| Dr Kevin John O'Donnell | Trustee | |
| Mrs Hülya Apaydin | Trustee | |
| Wayne Belft | Trustee | Appointed on 15 October 2022 |
Plans for future periods
The overall activity of the Pompe Support Network is guided by charitable objectives and the detail is provided in a Strategic Plan.
Statement of Trustees' responsibilities
The Trustees 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).
The Charity Commission requires the Trustees to prepare financial statements for each financial year. The Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the status of the CIO 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:
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Select suitable accounting policies and then apply them consistently.
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Observe the methods and principles of the Charities SORP (FRS 102).
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Make judgments and accounting estimates that are reasonable and prudent.
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State whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements.
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Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the CIO will continue in business.
The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the CIO’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 Charity Commission regulations. They are also responsible for safeguarding the assets of the CIO 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
19[th] January 2024
And signed on their behalf
Allan Muir Chair of Trustees
Charity No. 1186383
43a North Lane Buriton Petersfield GU21 5RS
Pompe Support Network
for the year ending 31 March 2023
Prepared by: Miss S - Accounting for Purpose CIC
Pompe Support Network - year ending 31 March 2023 Income and Expenditure
Charity No.
1186383
| Income: | ||
|---|---|---|
| Donations Donations in Kind Grants Restricted Unrestricted Total Income |
£ 26,355 24,625 |
£ £ 5,945 35,350 50,980 92,276 |
| Expenditure: | ||
| Direct Expenses: Projects Public Speakers Awareness & Collaborative Meetings IT Consulting & Website Development Other Direct Expenses Fundraising Administrative Expenses: Advertising & Marketing Management/Strategic Support Consultancy Salaries Pension Staff Training Travel Telephone & Internet Postage, Freight & Courier Printing & Stationery IT Software and Consumables Audit & Accountancy fees Professional Fees Subscriptions Donations Sundry Bank Fees Foreign Exchange Total Expenditure |
£ 4,368 - - 430 1,375 - |
£ £ 6,173 68,333 74,506 |
| 309 34,000 1,200 24,000 533 - 4,855 - - 63 840 2,321 - 252 - - 20 61 - |
||
| Excess of Income over Expenditure | 17,770 | |
| Restricted Reserves Unrestricted Reserves |
10,000 16,519 |
Signed by the Chair of Trustees on behalf of all the Trustees:
Signature:
Name:
Date of Approval:
Pompe Support Network - Charity Number 1186383 YE 31Mar23 compared with YE 31Mar22
Charity No. 1186383
| Income: | YE 31Mar23 | YE 31Mar23 | YE 31Mar22 restated |
YE 31Mar22 restated |
|---|---|---|---|---|
| Donations Donations in Kind Grants Restricted Unrestricted Total Income |
£ 26,355 24,625 |
£ 5,945 35,350 50,980 92,276 |
£ 9,001 3,535 |
£ 9,758 57,550 12,536 |
| 79,844 | ||||
| Expenditure: | ||||
| Direct Expenses: Projects Public Speakers Awareness & Collaborative Meetings IT Consulting & Website Development Other Direct Expenses Fundraising Administrative Expenses: Advertising & Marketing Management/Strategic Support Consultancy Salaries Pension Staff Training Travel Telephone & Internet Postage, Freight & Courier Printing & Stationery IT Software and Consumables Audit & Accountancy fees Professional Fees Subscriptions Donations Sundry Bank Fees Foreign Exchange Total Expenditure |
£ 4,368 - - 430 1,375 - |
£ 6,173 68,333 74,506 |
55,071 - - 500 - - |
£ 55,571 60,877.06 |
| 309 34,000 1,200 24,000 533 - 4,855 - - 63 840 2,321 - 252 - - 20 61 - |
- 34,000 6,612 16,000 266 - 501 - 14 - 679 2,354 520 164 - - 33 265 - |
|||
| 116,448 | ||||
| Excess of Income over Expenditure | 17,770 | 36,604 - |
||
| Restricted Reserves Unrestricted Reserves |
10,000 16,519 |
- 10,792 |
Prior Year Adjustment
The Reserves at 31 March 2022 have been adjusted by £2,044 to reflect a true and fair view of the Charity's closing position as at 31 March 2023.
Pompe Support Network - year ending 31 March 2023 Assets and Liabilities
Charity No.
1186383
Assets
| Assets | Assets | Assets |
|---|---|---|
| Fixed Assets 20-Jan-21 Ikonic Tecknology - HP ProBook 04-Feb-21 techINN - laptop Bank GBP Wise GBP Wise EUR Wise USD Paypal Total Assets |
850 1,029 Restricted Unrestricted 23,136 10,000 13,136 103 103 693 693 - - - 811 - 811 |
£ £ 1,879 24,742 26,621 |
| 10,000 14,742 |
||
| Liabilities | ||
| Wages Payable - Payroll PAYE Payable Pensions Payable Total Liabilities |
£ £ - 2 - 104 102 102 |
Signed by the Chair of Trustees on behalf of all the Trustees:
Signature:
Name:
Date of Approval:
Pompe Support Network (back page)
POMPEY SUPPORT NETWORK INDEPENDENT EXAMINER’S REPORT ON THE ACCOUNTS FOR THE YEAR ENDED 31ST MARCH 2023
Report to the trustees/ members of Pompe Support Network on the accounts for the year ended 31st March 2023.
Respective responsibilities of trustees and examiner
The charity's trustees are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year under section 144 of the Charities Act 2011 (the Charities Act) and that an independent examination is needed.
It is my responsibility to:
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examine the accounts under section 145 of the 2011 Charities Act,
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to follow the procedures laid down in the general Directions given by the Charity Commission (under section 145(5)(b) of the Charities Act, and
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to state whether particular matters have come to my attention.
Basis of independent examiner’s statement
My examination was carried out in accordance with general directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a ‘true and fair’ view and the report is limited to those matters set out in the statement below.
Independent examiner's statement
In connection with my examination, no matter has come to my attention
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which gives me reasonable cause to believe that in, any material respect, the requirements:
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to keep accounting records in accordance with section 130 of the Charities Act; and
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to prepare accounts which accord with the accounting records and comply with the accounting requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a 'true and fair' view which is not a matter considered as part of an independent examination
have not been met; or
- to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.
Donna Leppitt Independent Examiners Ltd Unit 2 The Broadridge Business Centre Delling Lane Bosham PO18 8NF Date: 30th April 2024
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