2024-06-30-accounts - The Smith-Magenis Syndrome (Sms) Foundation UK CIO

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK CIO Registered UK Charity No: 1186647 Registered Scottish Charity (SCIO) No: SC050921

ACCOUNTS

30[TH] JUNE 2024

Registered Address:

Smith-Magenis Syndrome (SMS) Foundation UK 61 High Street Pewsey Wiltshire SN9 5AF

Operating and Registered Address in Scotland:

Smith-Magenis Syndrome (SMS) Foundation UK 28 Kilbrennan Drive Tamfourhill Falkirk FK1 4SG __________

THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK CIO

Contents of the Financial Statements

For the year ended 30[th ] June 2024

	Page
Annual Report of the Trustees	3
Independent Examiner’s Report	7
The Smith-Magenis Syndrome (SMS) Foundation UK CIO	9
Receipts and Payments Account (General Purpose Fund)
Statement of Assets and Liabilities	10
Notes to the Accounts	11

Page 2

THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK CIO

Annual Report of the Trustees for the year ended 30[th] June 2024

The Trustees have pleasure in presenting their report together with the financial statements and the independent examiner’s report for the year ended 30[th] June 2024.

Reference & Administrative Information

Charity Name	Charity Registrations
The Smith-Magenis Syndrome (SMS) Foundation UK CIO	UK Registered Charity No 1186647 Registered Scottish CharitySC050921

Registered Address

The Smith-Magenis Syndrome (SMS) Foundation UK, 61 High Street, Pewsey, Wiltshire, SN9 5AF

Operating and Registered Address in Scotland

The Smith-Magenis Syndrome (SMS) Foundation UK, 28 Kilbrennan Drive, Tamfourhill, Falkirk, FK1 4SG

Trustees

Name	Elected	Re-Elected	Resigned
Hazel Wotherspoon(Chairperson)	16/11/2019	25/01/2022
Emma Riddell	16/11/2019	25/01/2022
Mick Pearson	16/11/2019	25/01/2022
Laura Maddocks	12/01/2021
WendyFerguson	12/01/2021		17/04/2024
Jayne Dainty	25/01/2022
Jacqueline Jenkins	07/06/2023

Debbie Brooks is a co-opted non-trustee member of the Board.

Structure, Governance & Management

Constitution

The Smith-Magenis Syndrome (SMS) Foundation UK CIO , 1186647, is a Charitable Incorporated Organisation (CIO). It is governed by its Foundation constitution which was adopted on 16[th] November 2019. The Smith-Magenis Syndrome (SMS) Foundation UK CIO became registered with the Charities Commission on 28[th] November 2019, and with OSCR as a Scottish Charitable Incorporated Organisation (SCIO) SC050921 on 21[st] April 2021.

Appointment of Trustees

Trustees are elected at the Annual General Meeting to serve for terms of three years. Retiring trustees are eligible to stand for re-election. The constitution states that there must be no fewer than three trustees. A minimum of one-third of the trustees are to have a direct family connection to SmithMagenis syndrome.

Page 3

Management

The Trustees are responsible for the strategic direction and governance of the charity, and for the delivery of charitable activities to meet the objectives.

A small part-time team is employed to run day-to-day operations. At the date of signing this report, this team comprises:

Communications Manager & Programmes Lead: Leeann Stevenson
Fundraising Manager: Helen Hargrave
Research & Sector Engagement Manager: Natasha Craven
Fraser Cardow: Fundraising Manager (trusts and foundations) (contractor)

Objectives & Activities

Charitable Purposes

The charity’s objects (“the objects”) are:

To preserve and protect the health and promote the relief of persons affected by Smith-Magenis Syndrome and any associated condition,
To advance the education of the medical profession and the general public on the subject of Smith-Magenis Syndrome and its implications for the family,
To advance public education by promoting research into the management of Smith-Magenis Syndrome and to publish the useful results thereof and to support organisations promoting research into Smith-Magenis Syndrome.

Background

The SMS Foundation UK (“The Foundation”) was set up as a parent support group in 1992 and until 2019 operated as an entirely volunteer-led, small, registered charity. The Trustees agreed that more resources and income would be required to meet the increasing demands and needs of the SMS community. It was decided to change the charity status to a CIO (Charitable Incorporated Organisation) to minimise personal risk, maximise financial potential and introduce staff to support and grow service delivery. In 2019, the Foundation UK began the transition to dissolve the UK and Scottish unincorporated charities and register as a CIO in England and SCIO in Scotland and completed this in April 2021.

Achievements & Performance

In the financial year 2023-2024 our charity has made significant strides in supporting the SmithMagenis Syndrome (SMS) community through dedicated outreach, engagement, and collaboration. Here's a snapshot of our key achievements:

Community Support and Engagement

Our team of staff and volunteers has been highly responsive, addressing 198 incoming enquiries (via emails, messages, and phone).
We are proud to have seen a 14% growth in our family and professional membership, further strengthening our support network.
Digital engagement continues to rise, with a 3.4% increase on Facebook and a 2.7% increase on Instagram, broadening our reach and engagement with the SMS community.
A key highlight of the year was launching a new initiative celebrating the lives of individuals with SMS. Seven articles were published, all contributing to increased website traffic and deeper community engagement.

Page 4

Partnerships and Collaborations

We have strengthened relationships within the rare disease community, establishing new partnerships with Parent Advisory Groups and umbrella organisations. We are also working alongside six other charities to challenge discriminatory legislation and advocate for the disability rights of the SMS community.
Our ongoing collaboration with The Cerebra Network continues, particularly through the Beond project, which aims to enhance understanding of behaviour, wellbeing, cognition, and health within the SMS population.
Additionally, we are partnering with Cambridge University on a 3-year research project focusing on the physical and mental health needs of those living with SMS.

Outreach and Awareness

This year, our staff and pastoral care volunteers delivered seven SMS awareness sessions in education settings and care homes, raising awareness and offering valuable insights into supporting individuals with SMS.

New Initiatives and Services

To support our pastoral care team, we have partnered with RareMinds, a specialised counselling service for the rare disease community, set to roll out in November 2024.
To assist families navigating the educational system, we have developed a partnership with SEND Consultant Annette Benstead, launching a 1:1 EHCP service in November 2024 following the success of a pilot case earlier this year.

Financial Review

Extensive efforts were made to raise funds and support for the Foundation throughout the year. Income of £81,579 was received this year. £33,491 came from grants, £48,005 came through charitable donations, legacy, and general fundraising activities, and £83 was received in bank interest.

Expenditure for the year totalled £84,648. This was spent as follows:

£54,140 on total staff costs.
£20,555 on costs for a national event for members planned for August 2024.
£4,606 on administration, insurance, software licences and membership subscriptions.
£1,936 on staff and trustee training and development.
£2,949 for fundraising activities. This included fundraising platform subscriptions, promotional materials, merchandising items, and event entries.
£62 on banking costs.
£400 in a grant to an SMS family towards the cost of kitchen equipment.

Cash balances at the year-end amounted to £33,895, of which £8,413 is restricted funding. Further detail on income and expenditure and the purpose of the restricted funding held at the yearend is shown on pages 11 to 13.

Page 5

Reserves Policy

The intention of the Foundation is to seek to retain a minimum of 12 months of core operating expenditure as the basis of its cash reserves, excluding restricted funding for projects.

At the year end, the Foundation held unrestricted cash reserves covering 6 months of core operating costs. Core operating costs exclude the costs of employees who will be directly working on already funded projects in the year ahead.

The Foundation is working to increase its cash reserves to the 12-month targeted level.

Plans for Future Periods

National Event 2024

Preparations are well underway for our upcoming National Event in August 2024 at The Mount Cook Activity Centre in Derbyshire. This year, we are excited to pilot an initiative that puts individuals with SMS at the heart of the event, offering family-friendly activities and vital information.

As we look forward to the coming year, we remain committed to supporting and advocating for the SMS community through innovative programmes, partnerships, and outreach efforts.

Approved by the trustees and signed on their behalf by:

Hazel Wotherspoon – Chairperson

Date: 28[th] March 2025

THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK CIO

Page 6

Independent Examiner’s Report to the Trustees of THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK CIO For the year ended 30[th] June 2024

Independent Examiner’s Report on the Accounts

Report to the trustees / members of: The Smith-Magenis Syndrome (SMS) Foundation UK CIO On accounts of the charity for: 1[st] July 2023 to 30[th] June 2024 Charity Registration: Registered UK Charity 1186647 Scottish Registered Charity (SCIO) SC050921 Set out on pages: Pages 9 to 13

Respective responsibilities of trustees and examiner

The charity's trustees are responsible for the preparation of the accounts in accordance with the terms of the Charities Act 2011, the Charities and Trustee Investment (Scotland) Act 2005 and the Charities Accounts (Scotland) Regulations 2006.

The charity’s trustees consider that an audit is not required for this year under section 144 of the Charities Act 2011 and that the audit requirement of Regulation 10(1) (d) of the Charities Accounts (Scotland) Regulations 2006 does not apply.

It is my responsibility:

examine the accounts under section 145 of the Charities Act,
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
examine the accounts as required under section (44)(1) (c) of the Charities and Trustee Investment (Scotland) Act 2005
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 and with Regulation 11 of the Charities Accounts (Scotland) Regulations 2006.

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:

which gives me reasonable cause to believe that in, any material respect, the requirements:
to keep accounting records in accordance with section 130 of the Charities Act 2011 and with section 44(1)(a) of the Charities and Trustee Investment (Scotland) Act 2005 and Regulation 4 of the Charities Accounts (Scotland) Regulations 2006; and

Page 7

to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Charities Act 2011 and Regulation 9 of the Charities Accounts (Scotland) Regulations 2006

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.

Signed: Date: 31[st] March 2025 Name: Julie Russell Relevant professional qualification(s) or body (if any): CA

Address: 34 Orchard Drive, Edinburgh, EH4 2DZ

Page 8

THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK CIO, 1186647

Accounts for the period 1[st] July 2023 to 30[th] June 2024

Statement of Receipts and Payments Account (General Purpose Fund)

Receipts and Payments Account: General Fund

Note	£ £ £ Unrestricted Funds Restricted Funds Total 2024	£ Total 2023 36,690 9,523 16,955 18,925 785 67 38
8 8 4 8 9 8 8 5 5 5 5 5 5 7 9 10 13 6 12	11,300 - 11,300 5,000 - 5,000 17,101 16,390 33,491 25,102 - 25,102 208 - 208 83 - 83 6,395 - 6,395
	65,189 16,390 81,579	82,983
	2,949 - 2,949 - - - 62 - 62 29,322 24,818 54,140 1,936 - 1,936 - - - 1,680 - 1,680 2,329 - 2,329 - - - - - - 597 - 597 - - - 20,555 - 20,555 - 400 400 - - - - -	5,432 290 70 76,712 1,201 1,621 591 2,248 157 - - - 200 1,205 - -
	59,430 25,218 84,648	89,727
	65,189 16,390 81,579 59,430 25,218 84,648	82,983 89,727
	5,759 (8,828) (3,069) - - -	(6,744) -
	5,759 (8,828) (3,069)	(6,744)

The Notes on pages 11 to 13 form an integral part of these accounts.

Page 9

THE SMITH-MAGENIS SYNDROME (SMS) FOUNDATION UK

Statement of Balances on Assets and Liabilities at 30[th] June 2024

£ £ Unrestricted Funds Restricted Funds	£ Total 2024	£ Total 2023 43,708 (6,744)
19,723 17,241 5,759 (8,828)	36,964 (3,069)
25,482 8,413	33,895	36,964
	33,328 567 -	32,671 4,293 - 36,964 - - -
	33,895
	-
	-
	-

The Notes on pages 11 to 13 form an integral part of these accounts.

Approved by the Trustees and signed on their behalf by:

Hazel Wotherspoon (Chairperson)

Date: 28[th] March 2025

Page 10

Notes to the Accounts – For the Year Ended 30[th] June 2024

1. Basis of Accounting

These accounts have been prepared on the Receipts & Payments basis in accordance with the Charities Act 2011, Charities & Trustee Investment (Scotland) Act 2005 and the Charities Accounts (Scotland) Regulations 2006 (as amended).

2. Nature and purpose of the funds

Unrestricted funds are those that may be used at the discretion of the trustees in furtherance of the objects of the charity. The trustees maintain a single fund for the running of the charity.

Restricted funds may only be used for specific purposes. Restrictions arise when specified by the donor or when funds are raised for specific purposes. During the year, the charity received some restricted funding in the form of grants and donations.

3. Related Party Transactions

The charity’s insurance policy includes Trustee Indemnity for all its trustees. No other remuneration was paid to the trustees or to any connected persons during the year.

4. Grants and Donations

The following grants were received in prior years and spent in 2023-2024:

Grant	Provider	Purpose	Used for
£5,000	Mercers Company	Expansion and development of the Volunteer Engagement Strategy	Staff costs associated with the development of content and materials
£3,828	The National Lottery Community Fund	The Scottish Volunteer Engagement Plan and a programme of awareness training modules for Scotland	Staff costs associated with volunteer engagement and training
£8,828

The following grants and donations were received in 2023-2024: (Total £33,491, all of which was spent in the year)

Amount	Provider	Purpose	Used for
£1,500	Flynn Pharma	Unrestricted	To fund core costs
£4,000	Hugh Fraser Foundation	To fund work associated with volunteer engagement	Staff costs associated with the expansion and development of the Volunteer Engagement Strategy
£5,000	Robertson Trust	Unrestricted	To fund core costs
£9,990	The National Lottery Community Fund	The carer support service	Staff costs associated with the carer support service
£2,000	Albert Hunt	Carer support costs	Staff costs associated with the carer support service
£400	Independence at Home	To support someone with independent living	A grant to someone with SMS to support them at home

Page 11

Amount	Provider	Purpose	Used for
£1,000	Sylvia Aitken Trust	Unrestricted	To fund core costs
£4,601	Benevity	Unrestricted	To fund core costs
£5,000	The Bailey Thomas Charitable Trust	Unrestricted	To fund core costs
£33,491

The following restricted grants and donation balances are being held for use in future years:

Grant	Provider	Purpose
£536	Private Donation	To helpfamilies attend the conference
£5,127	The National Lottery CommunityFund	The Scottish Volunteer Engagement Plan and a programme of awareness trainingmodules for Scotland
£2,000	Meikle Foundation	Two in-person familyevents
£750	Private Donation	To helpfamilies attend the conference
£8,413

5. Administration Costs

These are the costs of running the charity and are as follows:

Software licences £2,329. These relate to a membership database and an electronic mailing application.
Staff training and development £1,936.
Payroll bureau, HR platform, website and stationery and postage £1,680.

Staff Costs

Average number of staff employed: 4 (1.8 FTE) Period of employment: 1[st] July 2023 to 30[th] June 2024 Staff salaries including taxes and pensions: £54,140 No member of staff has a salary above £60,000 p.a.

6. Trustee Expenses

No Trustees claimed expenses during the reporting period.

Travel and subsistence costs related directly to other activities and services of the Foundation has been included within the costs for these items.

Reimbursement of expenditure on direct purchases on behalf of the charity is recorded under Administration.

No professional or legal fees were incurred during the year.

7. Publications

The charity has moved to electronic publishing through the website and social media removing printing of newsletters and other materials.

8. Fundraising

Donations are recorded based on receiving an altruistic gift, either with a general charitable purpose, or for the support of a project. Fundraising includes all member led activities where contributions have been acquired or requested in respect to these activities. Fundraising also includes the text to donate campaigns run by the charity.

Page 12

The Foundation received donations totalling £11,300 from various individuals and organisations with the highest single donation being for £3,225.

Income raised by the SMS community totalled £25,102. Expenses for fundraising activities relate to expenditure on sports event entry fees, fundraising merchandise and donation platform fees and subscriptions and totalled £2,949

In memorial donations (also known as legacies) were £5,000.

Gross receipts from trading comprise sales of awareness merchandise through the charity’s online shop of £208.

9. Events

The charity has spent £20,555 in relation to its national event which is taking place in August 2024. Members have contributed £6,395 towards these costs in this financial period.

10. Grants

One grant to improve the life of a person with Smith-Magenis syndrome and their family was secured and paid totalling £400. This was towards the cost of an induction hob. The grant was funded by Independence at Home.

11. Research

There were no costs incurred in undertaking research this year.

12. Transfers between funds

No transfers are recorded as taking place between funds during the year.

13. Governance Costs

No governance costs were incurred during the year.

Page 13