2021-03-31-accounts

Allan Muir Chairman

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www.pompe.uk

TRUSTEES' REPORT

FOR THE Period 15[th] November 2019 to 31[st] MARCH 2021

The Trustees present their annual report together with the financial statements of the company for the period 15[th] November 2019 to 31 March 2021. 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, 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

• 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 been very successful in making progress in all areas, some examples are listed below.

Website

Our website was created and published in November 2019 and in May 2020 we recruited a communications manager to oversee the website content, maintenance, and the management of our social media channels and also the production and dissemination of regular newsletters to our subscribers.

Webinars, Video and Audio projects

From the outset, it was decided that Pompe Support Network would favour online webinars over annual conferences. The format is much more accessible for a community spread so widely geographically, and with accessibility issues. For that reason, we created the Zoom into Pompe (ZiP) series of webinars that feature a professional speaker and allow plenty of time for participants to ask questions, followed by general discussion. The presentations are published online within our Video library. We held 6 such meetings in the period to March 2021 and the videos are available through our website or our YouTube channel.

Through the Pompe Voices project we have created a number of podcasts, recorded with members of the Pompe community. Each podcast features a member of the Pompe community in conversation with, for example, their partner, sibling, friend, or carer, discussing the good, bad, and often amusing stories of living with Pompe Disease.

During this period, we also planned the production of an episodic film about Pompe disease. This will be filmed later in 2019 and will comprise five episodes showing the lives of people living with Pompe disease. They will cover a wide age range and different aspects of life; but each will concentrate on the abilities of people, rather than their disability.

Fundraising

We have created accounts on several platforms to enable donations to be received directly. These include Amazon Smile, Give as you Live, VirginMoneyGiving, Facebook Donations, PayPal Donate, eBay for Charity.

Five places we bought for the RideLondon cycling event, however the event was cancelled and refunded due to the Covid-19 pandemic.

Grant Applications

We have been very successful with our grant applications to the National Lottery Community Fund and several biotechnology companies including Sanofi-Genzyme, Amicus Therapeutics, Audentes Therapeutics, AskBio, Spark Therapeutics, AvroBio. Overall, the grant income exceeded our initial forecasts leaving the PSN in a very comfortable financial position as we anticipate major expenses and uncertainties for the planned film production.

Networking and collaborative working

Allan Muir is a founder member of the UK LSD Collaborative, an informal group of 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.

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 attended conferences and symposia held by the Society for the Study of Inborn Errors of Metabolism (SSIEM), The WORLD Symposium and joined a small number of online conferences.

Allan Muir was invited to speak at a meeting of the European Pompe Consortium (EPOC) for a meeting to discuss the diagnosis, care and management of Pompe disease.

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, Avalglucosidase Alpha, is under development by Sanofi-Genzyme. Allan Muir submitted the Scoping forms and attended the Scoping committee meeting on behalf of the Pompe community.

Neonatal Screening

Allan Muir has been a member of the Patient Advocacy for Newborn Screening group for many years; that group has since morphed into the Archangel Newborn Screening Alliance and Pompe support Network is an active member of the alliance and the campaign to add more rare diseases to the list of conditions screened for at birth under the UK National Screening Programme.

Research

Pompe support Network has supported research through companies investigating the quality of life of people living with Pompe disease, their expectations and experience of current and future treatments. Allan Muir is a co-author of papers resulting from this research and will present a poster at the World Muscle Society conference, later in 2019.

The Impact of Covid 19

Coronavirus has had an immense impact on everyone's lives and all charities have been affected.

A Covid-19 website page was set up to help members find the latest reliable information on the pandemic.

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 £35,210.68. 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 ".

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.

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

27[th] January 2022

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 period 15 November 2019 to 31 March 2021

Prepared by Miss S Business Support Ltd

Pompe Support Network - period 19 November 2019 to 31 March 2021 Independent Examiner's Report to the Trustees of Pompe Support Network

Period End 31 March 2021 Charity No. 1186383

I report to the trustees on my examiation of the accounts of the above charity for the period ended 31 March 2021 which are set out on pages 3 to 4.

Responsibilities and basis of report

As the charitiy's trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ("the Act").

I report in respect of my examination of the Charity's accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by te Charity Commission under section 145(5)(b) of the Act.

Independent examiner's statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examinationn which gives me cause to believe that in, any material respect:

• the accounting records were not kept in accordance with section 130 of the Charities Act; or

• the accounts did not accord with the accounting records; or

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.

Signed:

Date: 24-Jan-22

Name: Miss Fiona M Sanderson BA(Hons) ACMA CGMA MICB Miss S Business Support Ltd Office 14, Steel House 4300 Parkway Whiteley PO15 6FP

Pompe Support Network - period 19 November 2019 to 31 March 2021 Income and Expenditure

Charity No.

1186383

Income:
Donations Donations in Kind Grants Restricted Unrestricted Total Income	£ 29,069.22 32,821.77	£ £ 5,901.03 25,500.00 61,890.99 93,292.02
Expenditure:
Direct Expenses: Projects Public Speakers Awareness & Collaborative Meetings IT Consulting & Website Development Fundraising Administrative Expenses: Advertising & Marketing Management/Strategic Support Staff Training Travel Telephone & Internet Postage, Freight & Courier Printing & Stationery IT Software and Consumables Audit & Accountancy fees Professional Fees Subscriptions Sundry Bank Fees Foreign Exchange Total Expenditure	£ 765.65 4,000.00 3,600.00 16,830.00 502.26	£ £ 25,697.91 19,633.76 45,331.67
	1,764.77 12,800.00 322.52 788.32 45.00 35.42 92.25 2,950.21 45.00 200.00 375.55 58.00 141.55 15.17
Excess of Income over Expenditure		47,960.35
Fixed Assets		1,878.97
Restricted Reserves Unrestricted Reserves		10,870.70 35,210.68

Signed by the Chair of Trustees on behalf of all the Trustees:

Signature:

Name:

Mr Allan D J Muir

27th January 2022

Date of Approval:

Pompe Support Network - period 19 November 2019 to 31 March 2021 Assets and Liabilities

Charity No.

1186383

Assets

Assets	Assets
Assets retained for the charity's own use Ikonic Tecknology - HP ProBook techINN - laptop Bank GBP Wise US Dollar Paypal Total Assets	£ £ 849.99 1028.98 1,878.97 Restricted Unrestricted 45,670.79 10,870.70 34,800.09 13.97 - 13.97 396.62 - 396.62 10,870.70 35,210.68 46,081.38 47,960.35
Liabilities
None Total Liabilities	£ £ £ -

Total Liabilities

Signed by the Chair of Trustees on behalf of all the Trustees:

Signature:

Mr Allan D J Muir

Name: 27th January 2022 Date of Approval:

Pompe Support Network (back page)

Charity No. 1186383

43a North Lane Buriton Petersfield GU21 5RS

Pompe Support Network

for the period 15 November 2019 to 31 March 2021

Prepared by Miss S Business Support Ltd

Pompe Support Network - period 19 November 2019 to 31 March 2021 Independent Examiner's Report to the Trustees of Pompe Support Network

Period End 31 March 2021 Charity No. 1186383

I report to the trustees on my examiation of the accounts of the above charity for the period ended 31 March 2021 which are set out on pages 3 to 4.

Responsibilities and basis of report

As the charitiy's trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ("the Act").

I report in respect of my examination of the Charity's accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by te Charity Commission under section 145(5)(b) of the Act.

Independent examiner's statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examinationn which gives me cause to believe that in, any material respect:

• the accounting records were not kept in accordance with section 130 of the Charities Act; or

• the accounts did not accord with the accounting records; or

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.

Signed:

Date: 24-Jan-22

Name: Miss Fiona M Sanderson BA(Hons) ACMA CGMA MICB Miss S Business Support Ltd Office 14, Steel House 4300 Parkway Whiteley PO15 6FP

Pompe Support Network - period 19 November 2019 to 31 March 2021 Income and Expenditure

Charity No.

1186383

Income:
Donations Donations in Kind Grants Restricted Unrestricted Total Income	£ 29,069.22 32,821.77	£ £ 5,901.03 25,500.00 61,890.99 93,292.02
Expenditure:
Direct Expenses: Projects Public Speakers Awareness & Collaborative Meetings IT Consulting & Website Development Fundraising Administrative Expenses: Advertising & Marketing Management/Strategic Support Staff Training Travel Telephone & Internet Postage, Freight & Courier Printing & Stationery IT Software and Consumables Audit & Accountancy fees Professional Fees Subscriptions Sundry Bank Fees Foreign Exchange Total Expenditure	£ 765.65 4,000.00 3,600.00 16,830.00 502.26	£ £ 25,697.91 19,633.76 45,331.67
	1,764.77 12,800.00 322.52 788.32 45.00 35.42 92.25 2,950.21 45.00 200.00 375.55 58.00 141.55 15.17
Excess of Income over Expenditure		47,960.35
Fixed Assets		1,878.97
Restricted Reserves Unrestricted Reserves		10,870.70 35,210.68

Signed by the Chair of Trustees on behalf of all the Trustees:

Signature:

Name:

Mr Allan D J Muir

27th January 2022

Date of Approval:

Pompe Support Network - period 19 November 2019 to 31 March 2021 Assets and Liabilities

Charity No.

1186383

Assets

Assets	Assets
Assets retained for the charity's own use Ikonic Tecknology - HP ProBook techINN - laptop Bank GBP Wise US Dollar Paypal Total Assets	£ £ 849.99 1028.98 1,878.97 Restricted Unrestricted 45,670.79 10,870.70 34,800.09 13.97 - 13.97 396.62 - 396.62 10,870.70 35,210.68 46,081.38 47,960.35
Liabilities
None Total Liabilities	£ £ £ -

Total Liabilities

Signed by the Chair of Trustees on behalf of all the Trustees:

Signature:

Mr Allan D J Muir

Name: 27th January 2022 Date of Approval:

Pompe Support Network (back page)