**Allan Muir** Chairman
Email allan@pompe.uk Phone +44 (0) 1730 231554 Mobile +44 (0) 7950 646265
**www.pompe.uk**
## TRUSTEES' REPORT
FOR THE Period 1[st] April 2023 to 31[st] March 2024
The Trustees present their annual report together with the financial statements of the company for the period 1[st] April 2023 to 31[st] March 2024. 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:
1. 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
2. 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:
- Act as a focus for the UK Pompe community
- Provide appropriate and well-informed non-medical advice
- Provide accessible and clear supply of information for all stakeholders
- Provide timely information relating to new medical interventions
- Promote, support, and publish research relevant to Pompe disease
- Promote research into medical treatments and devices for Pompe disease.
- Provide independent advice relating to clinical studies for Pompe disease
- Hold a print and online library of published works pertinent to Pompe disease.
- Encourage meetings to exchange information between stakeholders.
- Promote early diagnosis of Pompe disease
- Support UK neonatal screening for Pompe disease
- Promote public awareness and understanding of Pompe disease
We have continued to make progress in all areas, some examples are listed below.
## Personnel
In January 2023 the Pompe Support Network recruited Mrs Hülya Apaydin as our part-time CEO, contracted to work 20 hours per week. Hülya brings a wide range of professional and personal experience to the role. She was previously a Trustee of the PSN, a position she resigned from at the same time.
## Website
The Pompe Support Network website, www.pompe.uk 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 and Trustee of Pompe Support Network. Additionally, we offer a counselling service through a professional counsellor, Caroline Finill who works at Psychology Partners.
## Publications
Our inspirational book, “This Little Thing I Do”, was published in 2023. It was created, published and distributed to members of the UK Pompe community thanks to a grant from the National Lottery.
We also published a children’s book, “Leo and the Floppy Sloth”,written by the mother of a child with Pompe disease. All cost of the publication were covered by Pompe Support Network, and it has been made available to purchase online through our website.
## Fundraising
Public donations continue to be received, but no fundraising events have been organised due 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, a recently formalised Charitable Incorporated Organisation 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 stepped down as vice-chair and member of the International Pompe Association (IPA) and our CEO, Hülya Apaydin became an IPA board member in his place.
Conferences and Meetings
Allan Muir and Hulya Apaydin attended the WORLD Symposium in San Diego where the charity was allocated a booth, allowing us to share our literature and discuss our work with many delegates from around the world.
Allan Muir and fellow Trustee, Kevin Annesley, were invited to attend a Pompe Masterclass in Manchester, primarily for young medics less familiar with Pompe. Kevin was asked to describe the story of his lengthy diagnostic odyssey with the audience. It was organised by the team at the Royal Salford Hospital. Prof Mark Roberts later wrote:
_“Thanks to you all I think the meeting went really well and I have already had requests for attachments at Salford and potential research collaborations._
_Kevin your story as a patient was inspiring and with Val and Allan’s lectures and questions ensured we remained patient focussed.”_
The meeting was a great opportunity to network with UK and international Healthcare Professionals and homecare company representatives.
AM was invited to speak (virtually) to the European Tay-Sachs and Sandhoff family conference on 29[th] November. They were interested to hear about the Pompe experience in the 12 months following the commercialisation of Myozyme; they are soon to have a new drug authorised and want to know what to expect.
## Representation to Regulatory Bodies
Pompe Support Network was 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, was then under development by Amicus Therapeutics. Allan Muir submitted presented evidence to the NICE meeting on behalf of the Pompe community. The drug was subsequently approved by NICE for patients in England.
Allan Muir also represented the Pompe community in Wales to the Welsh regulators All Wales Medicines Strategy Group (AWMSG) who have also approved both next generation Enzyme Replacement Therapies.
## 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 and Hülya Apaydin both attended meetings of this group throughout the period.
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
Pompe Support Network 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 continue 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 £38,686. 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:
|Trustees serving during this period
The following individuals served on the board of trustees:|Trustees serving during this period
The following individuals served on the board of trustees:|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|||
||||
||||
|Kevin John O'Donnell
Trustee|||
||||
||||
|Hülya Apaydin
Trustee
Resigned 15thJanuary 2024|||
||||
||||
|Wayne Belfitt
Trustee|||
||||
||||
|Malcolm Knightly
Trustee
Appointed on 29 May 2023|||
||||
## 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:
- 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 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
23[rd] January 2025
And signed on their behalf
Allan D J Muir Chair of Trustees
Charity No. 1186383
43a North Lane Buriton Petersfield GU21 5RS
## Pompe Support Network
for the year ending 31 March 2024
Prepared by: Miss S - Accounting for Purpose CIC
**Pompe Support Network - year ending 31 March 2024 Income and Expenditure**
Charity No.
1186383
|**Income:**|||
|---|---|---|
|Donations
Donations in Kind
Grants
Restricted
Unrestricted
**Total Income**|£
18,000
22,616|£
£
8,780
22,500
40,616
**71,896**|
||||
||||
|**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
Insurance
Subscriptions
Donations
Sundry
Bank Fees
Foreign Exchange
**Total Expenditure**|£
6,956
-
-
-
1,214
-|£
£
8,170
53,085
**61,256**|
||62
22,500
-
19,615
415
-
6,429
-
80
138
1,300
1,361
210
711
85
-
-
93
87||
||||
||||
|**Excess of Income over Expenditure**||**10,640**|
||||
|Restricted Reserves
Unrestricted Reserves||974
38,686|
Signed by the Chair of Trustees on behalf of all the Trustees:
**Signature:**
**Name:**
**Date of Approval:**
**Pompe Support Network - Charity Number 1186383 YE 31Mar24 compared with YE 31Mar23**
Charity No. 1186383
|**Income:**|YE 31Mar24|YE 31Mar24|YE 31Mar23
restated|YE 31Mar23
restated|
|---|---|---|---|---|
|Donations
Donations in Kind
Grants
Restricted
Unrestricted
**Total Income**|£
18,000
22,616|£
8,780
22,500
40,616
**71,896**|£
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
Insurance
Subscriptions
Donations
Sundry
Bank Fees
Foreign Exchange
**Total Expenditure**|£
6,956
-
-
-
1,214
-|£
8,170
53,085
**61,256**|£
4,368
-
-
430
1,375
-|£
6,173
68,333|
||62
22,500
-
19,615
415
-
6,429
-
80
138
1,300
1,361
210
711
85
-
-
93
87||309
34,000
1,200
24,000
533
-
4,855
-
-
63
840
2,321
-
-
252
-
-
20
61
-||
||||||
|||||**74,506**|
||||||
|**Excess of Income over Expenditure**||**10,640**||**17,770**|
||||||
|Restricted Reserves
Unrestricted Reserves||974
38,686||1,000
16,519|
**Pompe Support Network - year ending 31 March 2024 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
33,361
974
32,387
89
-
89
672
-
672
3,806
-
3,806
1
-
1|£
£
1,879
37,929
**39,808**|
||974
36,956||
||||
|**Liabilities**|||
|Wages Payable - Payroll
PAYE Payable
Pensions Payable
**Total Liabilities**||£
£
-
2
-
150
149
**149**|
Signed by the Chair of Trustees on behalf of all the Trustees:
S **ignature:**
Allan D J Muir
**Name:**
23 January 2025
**Date of Approval:**
## **Independent examiner's report on the accounts**
**Section A Independent Examiner’s Report**
**Report to the trustees/** Charity Name **members of** Pompe Support Network
**On accounts for the year** 31[st] March 2024 **Charity no** 1186383 **ended (if any)**
## **Set out on pages**
(remember to include the page numbers of additional sheets)
I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended 31/03/2024.
- **Responsibilities and** As the charity trustees of the Trust, you are responsible for the preparation **basis of report** of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”).
I report in respect of my examination of the Trust’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
**Independent** I have completed my examination. I confirm that no material matters have **examiner's statement** come to my attention (other than that disclosed below *) in connection with the examination which gives me cause to believe that in, any material respect:
- accounting records were not kept in accordance with section 130 of the Act or
- the accounts do not accord with the accounting records
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in order to enable a proper understanding of the accounts to be reached.
* _Please delete the words in the brackets if they do not apply._
**Signed: Date:** 14/01/2025 **Name:** Paul O’Brien **Relevant professional** ICPA **qualification(s) or body (if any): Address:** 34 King James Close Fordham, Ely CB7 5SA
**October 2018**
1
**IER**
**Section B Disclosure**
Only complete if the examiner needs to highlight matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners).
**Give here brief details of any items that the examiner wishes to disclose** .
**October 2018**
2
**IER**