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2022-06-30-accounts

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

ACCOUNTS

30[TH] JUNE 2022

Registered Address:

Smith-Magenis Syndrome (SMS) Foundation UK 18 Suthmere Drive Burbage Marlborough SN8 3TG

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 2022

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 2022

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 2022.

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, 18 Suthmere Drive, Burbage, Marlborough, SN8 3TG

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
Nick Hunt 16/11/2019 03/10/2022
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
Rosina Mosedale 25/01/2022 13/01/2023
Jayne Dainty 25/01/2022

Two individuals have been co-opted as non-trustee members of the board: Jacqueline Jenkins and Debbie Brooks.

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 for 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 Smith-Magenis 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. This team comprises:

Objectives & Activities

Charitable Purposes

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

  1. To preserve and protect the health and promote the relief of persons affected by Smith-Magenis Syndrome and any associated condition,

  2. 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,

  3. 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

During the reporting period, the Foundation continued to deliver activities to meet its charitable purposes as follows:

  1. Family membership has grown by 43%, and overall reach has increased by 10%. A new subscriber option has been created for individuals to join our mailing list for our latest news and information.

  2. Delivery of a four-day conference for families and professionals working with SMS in April/May 2022 (postponed from 2021 due to Covid-19).

  3. Handled 84 enquiries and demand for support from families and professionals.

  4. Provided funding of £500 to family towards a hydrotherapy bath improve the quality of life their son with SMS.

  5. Promotion of the regular giving scheme 'SMS 1711 Circle' which is currently generating a monthly income of £226.

  6. Continued to embed our Regional Parent Supporters (RePS) programme.

  7. Hosted internship project on understanding vision and visual impairments in SMS.

  8. Launched internship projects covering education, behaviours, transitions, medical matters, obesity in SMS, adult residential options, and impact of genetic diagnosis.

  9. Pro-active participation in Patient Engagement and Advisory Groups on the implementation plans for the UK Rare Disease Framework.

Page 4

  1. Delivered training sessions into schools to directly support SMS children in the classroom, NHS learning disability teams, care organisations, and adult day service provider.

  2. Updated the website to include specific information to help families, developed and written a blog ‘Spotlight on SMS’ featuring articles about sleep and eyesight.

  3. Increased social media following across all platforms, with a 23% rise in Facebook following (primary account), and an increase in post reach of 471%.

  4. Supported regional community social events.

  5. Continued to develop our digital strategy, including the implementation of CRM Beacon for membership management.

Financial Review

Extensive efforts were made to raise funds and support for the Foundation throughout the year. £105,691 was received this year. £35,228 came from grants. £47,119 through charitable donations and general fundraising activities, and £23,345 was received towards the cost of accommodation and delegate fees for our conference.

Expenditure for the year totalled £135,109. This was spent as follows:

Cash balances at the year end amounted to £43,708, of which £10,222 is restricted funding.

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. However, in light of the impact of Covid-19 and the move to employing staff members immediately followed by the pandemic, Trustees agreed that the Foundation could operate with 6 months of reserves as a reasonable position under those circumstances, and work to grow this to the 12-month level. Should unrestricted reserves fall to 3 months of core operating costs then contingency measures would be implemented to lower planned expenditure to sustain the charity for at least one year.

At the year end, the Foundation held reserves covering 5.4 months of core operating costs.

Reserves post year end

The Foundation continues to secure funding and is supported by the incredible efforts of many supporters, making it possible to deliver important support to families and those with SMS. However, the pandemic and cost-of living crises have made fundraising very competitive. As a result, the reserves position deteriorated post year end which necessitated a reduction in the size of the part-time staff team and the role of CEO was made redundant.

Page 5

Plans for Future Periods

An old proverb gave us inspiration… “It takes a village to raise a child”. We understand the complex needs of a person with SMS and recognise what it takes to give them the support they need. It takes a community of people including family, friends, peers, doctors, nurses, practitioners, and teachers. This got us thinking… What if we could build our own village?

Our purpose is to ensure that every person with SMS is supported by a village of caregivers and professionals who are equipped and empowered with the knowledge and understanding to meet their needs.

During the next financial year, the Foundation intends to continue to deliver activities to meet the objects of the charity, whilst we also plan out our virtual ‘SMS Village’ with the definition of our fiveyear development plan and put in place the infrastructure on which to build our ambition. Our medium to long term focus shall be on:

We shall support our SMS community and lay our foundations for future development by:

  1. Prioritising our community’s needs with a focus on:

  2. Carer support service

  3. Education support services

  4. Training programme

  5. Events programme

  6. Medical information packs

  7. Enhancing our knowledge through continuing to offer internship projects with emphasis on medical awareness, health, behaviour, diet and obesity, education, transitions, and adult life.

  8. Build networks with other organisations to grow collaborative opportunities, bringing our knowledge and experience to help shape wider policies and services.

  9. Strengthen our core team by bringing new skills to the board, volunteers, and staff. Utilise pro bono experts to help in our development.

  10. Grow our membership and supporter base.

  11. Improve sustainability by increasing income generation.

  12. Improve engagement and strengthen brand, through the development of our communication strategy, engagement strategy, corporate and brand guidelines, and resources.

Approved by the trustees and signed on their behalf by:

Hazel Wotherspoon – Chairperson

Date:

19[th] March 2023

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 2022

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 2021 to 30[th] June 2022 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:

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:

  1. which gives me reasonable cause to believe that in, any material respect, the requirements:

  2. 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

have not been met; or

  1. to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

----- Start of picture text -----
19 [th] March 2023
Signed: Date: 15 [th] February 2023
Name: Julie Russell
Relevant professional
qualification(s) or body (if any): CA
----- End of picture text -----

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 2021 to 30[th] June 2022

Statement of Receipts and Payments Account (General Purpose Fund)

Receipts and Payments Account: General Fund

Receipts
Voluntary Sources
Donations and membership fees
Legacies
Grants
Receipts from fundraising activities
Gross receipts from trading
Income from investments
Organised Event Income
Gross Receipts from other activity
Total Receipts / Income
Payments
Expenses for fundraising activities
Gross Trading Payments
Banking / Investment costs
Payments relating directly to
charitable activities
Staff Costs
Administration & Office Costs
Insurances & Licences
Equipment
Subscriptions & Entrance Fees
Publications
Events
Grants
Governance Costs
Trustee Expenses
Total Expenditure / Payments
Total Receipts
Total Payments
Surplus / (Deficit) for the year
Transfers between funds
Surplus / (Deficit) for the year		 Note £
£
£
Unrestricted
Funds
Restricted
Funds
Total
2022		 £
Total
2021

2,286

115

51,633

22,639

329

-

450

1,016
8
8
4
8
9
8
8
5
5
5
5
5
7
9
10
13
6
12		 24,203
-
24,203
989
-
989
-
35,228
35,228
19,859
-
19,859
2,062
-
2,062
4
-
4
23,345
-
23,345
-
-
-
70,463
35,228
105,691		 78,468
3,210
-
3,210
3,918
3,918
96
96
-
-
-
44,017
33,682
77,699
3,137
3,137
1,179
1,179
48
48
383
383
201
201
36,572
8,166
44,738
500
-
500
-
-
-
-
-
2,534

-

78

-

81,013

1,070

2,499

27

120

-

9,432
162
1,271
-
93,261
41,848
135,109		 98,206
70,463
35,228
105,691
93,261
41,848
135,109
78,468
98,206
(22,798)
(6,620)
(29,418)
-
-
-		 (19,738)
-
(22,798)
(6,620)
(29,418)		 (19,738)

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 2022

Fund Reconciliation
Cash at Bank & In Hand – Start of year
Surplus / (Deficit) for the year
Transfer of Assets from 1072573
Cash at Bank & In Hand – end of year
Bank & Cash Balances
CAF Bank Account
PayPal Account
Cash in Hand
Other Assets (Unrestricted Fund)
There are no other assets
Liabilities (Unrestricted Fund)
No current unrestricted fund liabilities
Liabilities (Restricted Fund)
No current restricted fund liabilities		 £
£
Unrestricted
Funds
Restricted
Funds		 £
Total
2022		 £
Total
2021
5,691.77
(19,738.42)
87,173.11
56,284.46
16,842.00
(22,797.88)
(6,620.25)
-
-		 73,126.46
(29,418.13)
-
33,486.58
10,221.75		 43,708.33 73,126.46
41,599.77
2,108.56
-		 68,553.63
4,572.83
-
73,126.46
-
-
-
43,708.33
-
-
-

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: 19[th] March 2023

Page 10

Notes to the Accounts – For the Year Ended 30[th] June 2022

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.

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 Received

The following grants were received in prior years and spent in 2021-2022: Spend £16.842

Grant Provider Purpose Used for
£3,000 P F Charitable Trust Core Costs General salaries and
overhead costs
£9,842 Pears Foundation (Contact) Core Costs General salaries and
overhead costs
£3,000 P F Charitable Trust Core Costs General salaries and
overhead costs
£1,000 Sir James Roll Trust Core Costs General salaries and
overhead costs

The following grants were received during 2021-2022: (Total £35,228, of which £25,006 was spent in the year

Grant Provider Purpose Used for
£1,000 Arnold Clark Unrestricted General salaries and
overhead costs
£2,000 The Hospital Saturday Fund Information and Support
Service core service and
running costs		 Salaries associated with
delivery of support and
development of web-based
information
£3,702 Co-op Community Community support Support for families to
attend regional and
national events and
associated staff support
costs
£1,000 Albert Hunt Information and Support
Service		 Salaries associated with
delivery of support and
development of web-based
information
£2,500 Jeans for Genes Core costs General salaries and
overhead costs
£3,686 Charities Trust (Nationwide
BuildingSociety)		 Adult residential internship
project		 Carried forward to cover
costs notyet incurred

Page 11

Grant Provider Purpose Used for
£10,000 C G Lawson Foundation Unrestricted General salaries and
overhead costs
£2,500 Mercers Company Conference costs Familyevents(Conference)
£5,000 Foyle Foundation Information and Support
Service(not conference)		 Carried forward
£2,500 Individual Donation To help families attend
conference		 Family events: £1,964 spent
and £536 carried forward
for use in futureyears
£1,000 New Forest Business Club Family small grants scheme Carried forward for use in
futureyears
£340 Jeans for Genes Core costs General salaries and
overhead costs

The following grants / balances are held for use in future years: Total £10,222

Grant Provider Purpose
£3,686 Charities Trust(Nationwide BuildingSociety) Adult residential internship project
£536 Individual Donation To helpfamilies attend conference
£1,000 New Forest Business Club Familysmallgrants scheme
£5,000 Foyle Foundation Information and Support Service (not
conference): Internship supervision for
information research projects, and web-
basedguidance

5. Administration Costs

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

Staff Costs

Number of staff employed: 4 (1.4 to 1.7 FTE) Period of employment: 1[st] July 2021 to 30[th] June 2022 Staff salaries including taxes and pensions: £77,699 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.

Page 12

7. Publications

The charity has moved to electronic publishing through the website and social media removing printing of newsletters and other materials, except for a limited number of members.

£142 was spend on printed leaflets to raise awareness of SMS, and £59 on the purchase of reference books.

8. Fundraising

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.

Donations are recorded as the basis of receiving of an altruistic gift either with a general charitable purpose or for the support of a project.

The Foundation received nine donations totalling £24,203 from various individuals and organisations with the highest single donation being for £2,700.

Income raised by the SMS community totalled £19,859. In memorial donations were £989.

Gross receipts from trading comprise sales of awareness merchandise through the charity’s online shop of £1,762 and £300 from the delivery of SMS awareness sessions.

Expenses for fundraising activities relate to expenditure on fundraising merchandise and donation platform fees and subscriptions and totalled £3,210.

Expenditure relating to trading totalled £3,918 and comprised the cost of merchandise and postage and packing.

9. Events

A four day in person conference was organised for families and professionals working with SMS.

Attendance and accommodation fees, and corporate support packages, raised £23,345.

The cost of the conference incurred during this financial year was £44,738. Total direct costs, excluding staff salaries, of the conference including deposits paid in previous years was £51,481.

10. Grants

One grant to improve the life of a person with Smith-Magenis syndrome was awarded of £500 towards the cost of a specialist hydrotherapy bath.

11. Research

No research was commissioned by the Foundation during the 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.

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