OpenCharities

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

2021-06-30-accounts

Charity registration number 1106008

Company registration number 05142341 (England and Wales)

ALEX, THE LEUKODYSTROPHY CHARITY ANNUAL REPORT AND UNAUDITED FINANCIAL STATEMENTS

FOR THE YEAR ENDED 30 JUNE 2021

ALEX, THE LEUKODYSTROPHY CHARITY

LEGAL AND ADMINISTRATIVE INFORMATION

Trustees L Milne
G Bridge
L Winn
O Bostock
T Watkins
S Jimenez
G Metcalf (Appointed 26 April 2021)
N Sarig (Appointed 26 August 2020)
J Livingston (Appointed 15 May 2022)
I Idafar (Appointed 6 February 2022)
Secretary Sara Hunt
Charity number 1106008
Company number 05142341
Registered office 45 Peckham High Street
London
SE15 5EB
Independent examiner Darren Harding ACA FCCA DChA
Richard Place Dobson Services Limited
1-7 Station Road
Crawley
West Sussex
RH10 1HT

ALEX, THE LEUKODYSTROPHY CHARITY

CONTENTS

Page
Trustees report 1 - 5
Independent examiner's report 6
Statement of financial activities 7
Balance sheet 8 - 9
Statement of cash flows 10
Notes to the financial statements 11 - 25

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) FOR THE YEAR ENDED 30 JUNE 2021

The trustees present their annual report and financial statements for the year ended 30 June 2021.

The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the charity's memorandum and articles of association , the Companies Act 2006 and "Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)".

Objectives and activities

The charity' s objects are:

The trustees have referred to the guidance in the Charity Commission's general guidance on public benefit when reviewing the charity's aims and objectives in planning its future activities. In particular, they have considered how planned activities will contribute to the aims and objectives they have set.

Achievements and performance

Organisation

Despite the challenges of the period, Alex TLC were able to successfully navigate the organisation through extended periods of lockdown without any losses to staff, and were even able to improve and increase the support services offered.

Government support through local authority grants and the furlough scheme were sufficient to support the charity’s retail business and senior staff were able to successfully apply for a variety of Covid-related charitable grants. These two income streams enabled the majority of core costs and salaries to be maintained throughout the period, ensuring our reserve levels were substantially improved ready for the next financial year and the prospect of significantly reduced governmental support.

Our stakeholder network grew significantly, particularly our relationships with pharmaceutical companies engaged in research for the rarer leukodystrophies. This also translated into additional financial support and the inclusion of a wider variety of support and research items in our 2021 Digital Community Weekend. Of equal note, our relationship with the NHS continued to strengthen through our involvement as the patient representative for the NHS England Inherited White Matter Disorders Diagnostic and Management Service and Patient Registry on the Development Committee (Inherited White Matter Disorders (IWMD) is an alternative term for leukodystrophy).

We also nurtured our relationships with peer organisations, and we:

We were also able to secure specific funding to employ a Beneficiary Support Officer who helped us to increase our digital support and engagement activities to meet the increased needs of our community. This can be evidenced through the substantial increase in support conversations during the period, from answering email queries to conducting home visits by Zoom. During 2019/2020 staff engaged in 298 support conversations, in 2020/21 this increased to 885 – a 197% increase, reflecting not only the burden Covid-19 was placing on our extremely vulnerable beneficiaries, but also the value of increasing staff capacity for engaging with and supporting our community.

page 1

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

Although the number of new beneficiaries welcomed during the period was broadly similar to the previous year, there were significant increases in the variety of conditions affecting newcomers. Our online visibility improved significantly during this period, thanks to targeted investment, and this is demonstrated by the variety of conditions affecting new beneficiaries coming to us for support. The lack of an increase in new beneficiaries overall may reflect Covid-related changes to NHS priorities and resources for the period, and subsequent reductions in opportunities for accurate diagnosis.

We took the decision to close our beneficiary grant programme temporarily due to uncertainties around income, acknowledging that we could give greater value to a larger number of beneficiaries by taking this step. This financial support programme has since reopened.

CHARITABLE OBJECTIVES

Across the year Alex TLC staff have:

We were able to further and introduce several projects during the period which are detailed below:

NHS England Inherited White Matter Disorders (IWMD) Diagnostic and Management Service and Patient Registry – Work to further this important project was significantly moved forward during the period and roll out was confirmed for April 2022, delayed due to the impact of Covid-19. Our position as patient voice on the Development Committee has allowed us to work with NHS medical professionals and commissioners to ensure the Registry meets community expectations, and we were asked to conduct a survey to determine what patients wanted to see from a Registry. The results of this survey have been instrumental in several areas and patients, or their parents/carers, will be able to input vital information themselves to demonstrate not only the physical impact of their condition, but also the psychosocial impact for both themselves and those that care for them. This is the first NHS Patient Registry that allows patients to enter their own data and will be ground-breaking in terms of its ability to direct patient care. As mentioned earlier, we were also asked to suggest an additional patient organisation for this project. Following our guidance, Metabolic Support UK were invited to join us as the associate patient representative organisation on the Development Committee.

Newborn screening – we submitted a comprehensive response to a National Screening Committee consultation as part of their review of our original application to add adrenoleukodystrophy (ALD) to the UK newborn screening programme. This response including a targeted campaign website (Screen Our Boys), encouraging our community to submit 34 individual responses, collaborating with Zellweger UK (a condition which would also be identified by ALD testing), and involvement of numerous ALD specialists globally. Although the resultant negative response was disappointing, we were able to confirm a number of viable strategies to further our argument for the next review in 2023.

Support tools for children and young people – this project was advanced significantly and development of a children’s book for 8 to 12 year olds to help them understand the implications of a sibling’s diagnosis commenced. We sourced an experienced children’s health author and illustrator and held two developmental workshops to confirm characters and storyline.

Engagement with under-represented communities – our database audit confirmed that the demographic of our database is below national levels, and we conducted a survey with our community to learn more about how those from under-represented backgrounds perceived our support. Results demonstrated that we are supporting those that come to us very well and no issues were identified, indicating that it is our ability to reach patients from under-represented communities that needs attention. We also changed the imagery on our website to ensure it was welcoming to everyone, a practice which is now actively engaged in all projects. Once the new NHSE IWMD Service begins, we will work closely with providers to learn how we can engage better with patients and their families from different cultural backgrounds, and develop appropriate and sensitive resources to encourage wider uptake of our services .

page 2

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

Digital Support Services – Our new digital support strategy included a dedicated Covid page, updated weekly, on our website which was visited by 1,596 users. We also provided 13 interactive digital support activities attended by a total of 43 beneficiaries, ranging from networking “Coffee Mornings”, mindfulness sessions, and fun family activities. Although average attendance was low, ranging from 2 to 7 attendees, impact was high with feedback including “The general community feeling is lovely” and “It is very nice to be able to have the time to get together and just talk. For me, this interaction is something I enjoy a lot and look forward to each one.”.

NICE – Staff attended two Highly Specialised Appraisals for new leukodystrophy treatments, both of which were unfortunately withdrawn.

Digital Community Weekend 2020 – Our popular Community Weekend event was converted to a digital format and attended by 99 beneficiaries, medical professionals and researchers. Although we couldn’t capture the networking experiences of our in-person event, those that attended gained much needed information and support, and, for the first time we were able to include presentations and research updates around a variety of different conditions, which was very well met. The event Impact Report included comments such as “Range of topics was excellent” and “This digital approach has been just as good as 'the real thing'. Well done Alex TLC, and thank you.”. As well as impact for our beneficiaries, the event also provides an opportunity to develop new relationships with a wider range of pharmaceutical organisations, resulting in increases for this income stream.

Genetic counselling – A MSc Student in Genetic and Genomic Counselling at Cardiff University partnered with us on a project to explore family communication following a leukodystrophy diagnosis within the UK as part of his dissertation. As evidenced in our Impact Surveys, anecdotal beneficiary feedback and organisational experience, this is an area of great importance to our community with existing statutory services unable to fully meet needs. Results will feed into a wider project to develop and communicate a support service to assist beneficiaries inform wider family of a new diagnosis and the potential implications.

CHALLENGES

Community fundraising and voluntary income levels continued to be a concern, alongside the challenges of the uncertainty of Covid-19 and our retail business, which was closed for much of the period.

We decided to implement an online charity retail shop utilising a grant from the Social Enterprise Support Fund and supplement income levels. Unfortunately, success of the project was reliant on access to the Kickstart Scheme in tandem with the strict time restraints on the funding, and the Kickstart employees were unable to start until more than halfway through the project. As a result, we were unable to realise the target income necessary to continue the project.

Our Chief Financial Officer position became vacant at the start of the period, and we were unable to fill the role with a suitable candidate, despite best efforts. This lack of capacity meant the Accounts Manager, CEO and Treasurer needed to take on additional duties, and we had to request a filing extension. Despite these difficulties, staff have been able to monitor financial performance to a high level, although the situation has highlighted the necessity of ensuring this role is filled appropriately in the future.

FUTURE

We will look to maintain our increased levels of support staff and activities, optimising the opportunities our partnership with the new IWMD Patient Service and Registry will offer.

New processes have been identified to ensure improved organisational communications in all workstreams, accountability linked to meaningful Key Performance Indicators and regular workload reviews.

We will continue to increase our portfolio of corporate support, focussing on building relationships with pharmaceutical companies and the benefits these bring for both our organisation and the leukodystrophy community.

We will continue to work towards our mission of support and access to treatment for everyone with leukodystrophy.

page 3

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

Financial review

At the balance sheet date, the charity had unrestricted funds of £ 182,130 (2020: £126,144) and restricted funds of £ 123,470 (2020: 154,584)

It is the policy of the charity that unrestricted funds which have not been designated for a specific use should be maintained at a level the trustees feel are sufficient to cover the running costs of the charity for a period of approximately 3 months (£210,000). Our reserves are close to this target level, however, these were maintained due to the Government’s Covid support package for retail businesses, and the success of grant applications for emergency Covid funding. Our reserve levels are likely to be tested moving forward now this support has ended, and maintenance of these reserve levels are subject to staff capacity to improve pre-Covid income levels.

FUTURE PLANS

Work areas for 2021/2022 include:

Structure, governance and management

Governing document

The charity is controlled by its governing document, a deed of trust, and constitutes a limited company, limited by guarantee, as defined by the Companies Act 2006.

The trustees, who are also the directors for the purpose of company law, and who served during the year and up to the date of signature of the financial statements were:

L Milne
N Long (Resigned 7 February 2022)
G Bridge
L Winn
O Bostock
S Cork (Resigned 26 August 2020)
A Warden (Resigned 15 February 2021)
T Watkins
S Jimenez
G Metcalf (Appointed 26 April 2021)
N Sarig (Appointed 26 August 2020)
J Livingston (Appointed 15 May 2022)
I Idafar (Appointed 6 February 2022)

Recruitment and appointment of new trustees

The Charity seeks to appoint trustees who have relevant and often specialist knowledge. This has always included ensuring that those directly affected by the condition, such as parents, are among the trustees. This is complemented by appointing as trustees those with complementary skills, e.g. legal, finance, administration or relevant professional experience and knowledge.

None of the trustees has any beneficial interest in the company. All of the trustees are members of the company and guarantee to contribute £1 in the event of a winding up.

page 4

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

Key management remuneration

Key personnel remuneration is reviewed annually alongside performance appraisals within an agreed pay structure and applied using the same approach to pay and reward as for all employees. Any significant increases are approved by the Board of Trustees and reviewed within the constraints of the budget.

The trustees have assessed the major risks to which the charity is exposed, and are satisfied that systems are in place to mitigate exposure to the major risks.

The trustees r eport was approved by the Board of Trustees.

.............................. .............................. L Milne S Jimenez Trustee Trustee Dated: ......................... Dated: .........................

page 5

ALEX, THE LEUKODYSTROPHY CHARITY

INDEPENDENT EXAMINER'S REPORT

TO THE TRUSTEES OF ALEX, THE LEUKODYSTROPHY CHARITY

I report to the trustees on my examination of the financial statements of Alex, The Leukodystrophy Charity (the charity) for the year ended 30 June 2021.

Responsibilities and basis of report

As the trustees of the charity (and also its directors for the purposes of company law) you are responsible for the preparation of the financial statements in accordance with the requirements of the Companies Act 2006 (the 2006 Act).

Having satisfied myself that the financial statements of the charity are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of the charity’s financial statements carried out under section 145 of the Charities Act 2011 (the 2011 Act) . In carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.

Independent examiner's statement

Since the charity’s gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that I am qualified to undertake the examination because I am a member of the ICAEW, which is one of the listed bodies.

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

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 financial statements to be reached.

Darren Harding ACA FCCA DChA

Richard Place Dobson Services Limited 1-7 Station Road Crawley West Sussex RH10 1HT

Dated: .........................

page 6

ALEX, THE LEUKODYSTROPHY CHARITY

STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT

FOR THE YEAR ENDED 30 JUNE 2021

Unrestricted
Restricted
funds
funds
2021
2021
Notes
£
£
Income from:
Donations and grants
3
24,512
225,206
Other trading activities
4
482,238
-
Investments
5
23
-
Other income
6
-
-
Total income
506,773
225,206
Expenditure on:
Raising funds
7
439,116
76,048
Charitable activities
8
16,354
175,589
Total resources
expended
455,470
251,637
Net incoming/(outgoing)
resources before
transfers
51,303
(26,431)
Gross transfers between
funds
4,683
(4,683)
Net income/(expenditure) for
the year/
Net movement in funds
55,986
(31,114)
Fund balances at 1 July
2020
126,144
154,584
Fund balances at 30
June 2021
182,130
123,470		 Total
Unrestricted
Restricted
funds
funds
2021
2020
2020
£
£
£
249,718
68,068
146,273
482,238
560,082
-
23
134
-
-
1,870
-
731,979
630,154
146,273
515,164
470,930
3,214
191,943
84,360
38,996
707,107
555,290
42,210
24,872
74,864
104,063
-
3,705
(3,705)
24,872
78,569
100,358
280,728
47,575
54,226
305,600
126,144
154,584		 Total
2020
£
214,341
560,082
134
1,870
776,427
474,144
123,356
597,500
178,927
-
178,927
101,801
280,728

The statement of financial activities includes all gains and losses recognised in the year.

All income and expenditure derive from continuing activities.

The statement of financial activities also complies with the requirements for an income and expenditure account under the Companies Act 2006.

page 7

ALEX, THE LEUKODYSTROPHY CHARITY

BALANCE SHEET

AS AT 30 JUNE 2021

Notes
Fixed assets
Tangible assets
13
Current assets
Stocks
14
Debtors
15
Cash at bank and in hand
Creditors: amounts falling due within one
year
18
Net current assets
Total assets less current liabilities
Creditors: amounts falling due after more
than one year
19
Net assets
Income funds
Restricted funds
21
Unrestricted funds - general		 2021
£
671
60,045
302,502
363,218
(31,383)		 £
18,248
331,835
350,083
(44,483)
305,600
123,470
182,130
305,600		 2020
£
939
99,831
207,818
308,588
(52,224)		 £
24,364
256,364
280,728
-
280,728
154,584
126,144
280,728

page 8

ALEX, THE LEUKODYSTROPHY CHARITY

BALANCE SHEET (CONTINUED)

AS AT 30 JUNE 2021

The company is entitled to the exemption from the audit requirement contained in section 477 of the Companies Act 2006, for the year ended 30 June 2021.

The directors acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of financial statements.

The members have not required the company to obtain an audit of its financial statements for the year in question in accordance with section 476.

These financial statements have been prepared in accordance with the provisions applicable to companies subject to the small companies regime.

The financial statements were approved by the Trustees on .........................

.............................. ..............................
L Milne S Jimenez
Trustee Trustee

Company registration number 05142341

page 9

ALEX, THE LEUKODYSTROPHY CHARITY

STATEMENT OF CASH FLOWS

FOR THE YEAR ENDED 30 JUNE 2021

Notes
Cash flows from operating activities
Cash generated from operations
24
Investing activities
Purchase of tangible fixed assets
Investment income received
Net cash used in investing activities
Financing activities
New bank loans
Payment of obligations under finance leases
Net cash generated from/(used in) financing
activities
Net increase in cash and cash equivalents
Cash and cash equivalents at beginning of year
Cash and cash equivalents at end of year		 2021
£
(1,383)
23
50,000
(7,600)		 £
53,644
(1,360)
42,400
94,684
207,818
302,502		 2020
£
(3,031)
134
-
(3,582)		 £
140,481
(2,897)
(3,582)
134,002
73,816
207,818

page 10

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2021

1 Accounting policies

Charity information

Alex, The Leukodystrophy Charity is a private company limited by guarantee incorporated in England and Wales. The registered office is 45 Peckham High Street, London, SE15 5EB.

1.1 Accounting convention

The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) 'Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Companies Act 2006. The financial statements have been prepared under the historical cost convention.

The financial statements are prepared in sterling , which is the functional currency of the charity . Monetary a mounts in these financial statements are rounded to the nearest £.

1.2 Going concern

The trustees consider that there are no material uncertainties about the Charity's ability to continue as a going concern.

1.3 Charitable funds

Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.

Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.

Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.

1.4 Income

All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.

Donations and similar incoming resources are included in the year in which they are receivable, which is when the charity becomes entitled to the resource.

Grant income is recognised at the point when the charity becomes legally entitled to the income and may be deferred in accordance with the terms of the funders at the time of receipt.

Fundraising income is recognised when the charity becomes legally entitled to the income and the event to which it relates has taken place and includes sales of shop goods and is recognised at the point of sale.

Investment income is recognised as it is received.

page 11

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

1 Accounting policies

(Continued)

1.5 Expenditure

Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement, and the amount of the obligation can be measured reliably.

Expenditure is classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges are allocated on the portion of the asset’s use.

Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources.

Allocation and apportionment of costs

Support costs are those functions that assist the work of the charity but do not directly undertake charitable activities. Support costs include back office and governance costs which support Beneficiary Services, Awareness and Education , Research. These costs have been allocated and apportioned to the various charitable activities.

Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries.

Grants offered subject to conditions which have not been met at the year end date are noted as a commitment but not accrued as expenditure.

1.6 Tangible fixed assets

Tangible fixed assets are initially measured at cost and subsequently measured at cost or valuation, net of depreciation and any impairment losses.

Depreciation is recognised so as to write off the cost or valuation of assets less their residual values over their useful lives on the following bases:

Plant and machinery 25% straight line Fixtures, fittings & equipment Straight line over the length of the lease Motor vehicles 20% reducing balance

The gain or loss arising on the disposal of an asset is determined as the difference between the sale proceeds and the carrying value of the asset, and is recognised in the statement of financial activities .

1.7 Impairment of fixed assets

At each reporting end date, the charity reviews the carrying amounts of its tangible assets to determine whether there is any indication that those assets have suffered an impairment loss. If any such indication exists, the recoverable amount of the asset is estimated in order to determine the extent of the impairment loss (if any ) .

page 12

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

1 Accounting policies

(Continued)

1.8 Stocks

Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items.

Net realisable value is the estimated selling price less all estimated costs of completion and costs to be incurred in marketing, selling and distribution.

1.9 Cash and cash equivalents

Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in current liabilities.

1.10 Financial instruments

The charitable company only has financial assets and liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value.

Basic financial assets

Basic financial assets, which include debtors and cash and bank balances, are measured at transaction price including transaction costs .

Basic financial liabilities

Basic financial liabilities, including creditors and bank loans are initially recognised at transaction price .

Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one year or less. If not, they are presented as non-current liabilities. Trade creditors are recognised initially at transaction price and subsequently measured at amortised cost using the effective interest method.

1.11 Taxation

As a registered charity the company benefits from rate relief and is generally exempt from income tax and corporation tax. The charity is not registered for value added tax.

1.12 Employee benefits

The costs of short-term employee benefits are recognised as a liability and an expense.

The cost of any unused holiday entitlement is recognised in the period in which the employee's services are received.

1.13 Retirement benefits

The charitable company operates a defined contribution pension scheme. Contributions payable to the charitable company's pension scheme are charged to the Statement of Financial Activities in the period to which they relate.

1.14 Leases

Assets obtained under hire purchase contracts or finance leases are capitalised in the Balance Sheet. Those held under hire purchase contracts are depreciated over their estimated useful lives. Those held under finance leases are depreciated over their estimated useful lives or the lease term, whichever is shorter.

The interest element of these obligations is charged to the Statement of Financial Activities over the relevant period. The capital element of the future payments is treated as a liability.

page 13

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

2 Critical accounting estimates and judgements

In the application of the charity’s accounting policies, the trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.

The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised where the revision affects only that period, or in the period of the revision and future periods where the revision affects both current and future periods.

The main judgement and accounting estimates included in the accounts are:

3 Donations and grants

Unrestricted
Restricted
funds
funds
general
2021
2021
£
£
Donations and gifts
23,512
6,912
Grants received
1,000
218,294
24,512
225,206		 Total
Unrestricted
Restricted
funds
funds
general
2021
2020
2020
£
£
£
30,424
48,468
16,245
219,294
19,600
130,028
249,718
68,068
146,273		 Total
2020
£
64,713
149,628
214,341

page 14

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

3
Donations and grants
Grants receivable for
core activities
Bluebird bio
BBC Childrean in Need
Minoryx Therapeutics
CAF
Contact a Family
The Y Vonne Flux
Charitable Trust
J R Tijou Charitable Trust
The Rest-Harrow Trust
Marsh Christian Trust
The Sir Cliff Richard
Charitabl
Masonic Charity
Foundation
Tokio Marine Kiln
Syndicates Limited
P F Charitable Trust
The D Oyly Carte
National Lottery
Trustees of F B Baily
Thomas Charitable Fund
Ionis Pharmaceutic
Globals Make Some Noise
City of London
The Corra Foundation
Resilience
The Hobson Charity
The Edward Gostling
Foundation
Moondance Foundation
Garfield Weston
Foundation
Global MSN
INTERESBA Sarigs
Discretion
Postcode Neighbour
Social Entrepreneur
Support Fund
The Baily Thomas
The Grace Trust
The Sir Jules Thorn
Charitable Trust
The Thomas Sivewright
Catto Charitable Trust
Other grants under £500		 -
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
1,000
-
-
-
1,000		 -
13,166
8,000
39,465
25,000
-
-
-
-
-
-
-
-
-
10,000
-
-
-
-
-
1,000
-
-
15,000
25,000
1,000
20,000
38,713
20,000
-
1,000
750
200
218,294		 -
13,166
8,000
39,465
25,000
-
-
-
-
-
-
-
-
-
10,000
-
-
-
-
-
1,000
-
-
15,000
25,000
1,000
20,000
38,713
20,000
1,000
1,000
750
200
219,294		 -
-
8,000
-
-
1,000
2,000
200
400
1,000
1,000
4,000
2,000
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
19,600		 (Continued)
32,500
32,500
-
-
-
8,000
-
-
-
-
-
1,000
-
2,000
-
200
-
400
-
1,000
-
1,000
-
4,000
-
2,000
3,000
3,000
10,000
10,000
1,000
1,000
3,914
3,914
50,000
50,000
17,697
17,697
3,374
3,374
1,398
1,398
5,000
5,000
2,145
2,145
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
130,028
149,628		 (Continued)
32,500
32,500
-
-
-
8,000
-
-
-
-
-
1,000
-
2,000
-
200
-
400
-
1,000
-
1,000
-
4,000
-
2,000
3,000
3,000
10,000
10,000
1,000
1,000
3,914
3,914
50,000
50,000
17,697
17,697
3,374
3,374
1,398
1,398
5,000
5,000
2,145
2,145
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
130,028
149,628
149,628

page 15

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

4 Other trading activities

5
6
7		 Fundraising events
Shop income
Shop income - government grants
Other trading activities
Investments
Interest receivable
Other income
Other income
Raising funds
Unrestricted
Restricted
funds
funds
general
2021
2021
£
£
Fundraising and publicity
Staging fundraising events
-
-
Other fundraising costs
5,919
1,725
Staff costs
1,203
36,607
Fundraising and publicity
7,122
38,332		 Unrestricted
Unrestricted
funds
funds
general
general
2021
2020
£
£
-
5,895
270,559
393,274
211,679
160,913
482,238
560,082
Unrestricted
Unrestricted
funds
funds
general
general
2021
2020
£
£
23
134
Total
Unrestricted
funds
general
2021
2020
£
£
-
1,870
Total
Unrestricted
Restricted
Total
funds
funds
general
2021
2020
2020
2020
£
£
£
£
-
5,188
1,072
6,260
7,644
-
-
-
37,810
24,847
2,142
26,989
45,454
30,035
3,214
33,249		 Unrestricted
Unrestricted
funds
funds
general
general
2021
2020
£
£
-
5,895
270,559
393,274
211,679
160,913
482,238
560,082
Unrestricted
Unrestricted
funds
funds
general
general
2021
2020
£
£
23
134
Total
Unrestricted
funds
general
2021
2020
£
£
-
1,870
Total
Unrestricted
Restricted
Total
funds
funds
general
2021
2020
2020
2020
£
£
£
£
-
5,188
1,072
6,260
7,644
-
-
-
37,810
24,847
2,142
26,989
45,454
30,035
3,214
33,249
Total
2020
£
6,260
-
26,989
33,249

page 16

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

7 Raising funds
Fundraising trading: costs
of goods and other costs
Operating charity shops
Staff costs
Depreciation and
impairment
Fundraising trading:
costs of goods and
other costs		 141,766
284,197
6,031
431,994
439,116		 14,874
22,842
-
37,716
76,048		 156,640
307,039
6,031
469,710
515,164		 146,793
286,225
7,877
440,895
470,930		 (Continued)
-
146,793
-
286,225
-
7,877
-
440,895
3,214
474,144		 (Continued)
-
146,793
-
286,225
-
7,877
-
440,895
3,214
474,144
440,895
474,144

8 Charitable activities

Beneficiary
Support
Awareness
and
Education
Research Community
Weekend
2021
2021
2021
2021
£
£
£
£
Staff costs
51,367
26,593
1,444
9,661
Rates and water
2,087
2,087
-
-
Insurance
153
153
-
-
Light and heat
135
136
-
-
Telephone
384
142
-
-
Postage and stationery
30
27
-
-
Advertising
-
519
71
-
Community Weekend
387
-
-
3,772
Consultancy fees
1,175
3,000
-
10,602
Conference costs
38
-
-
-
Travel costs
-
-
-
-
Subscriptions
548
-
116
-
Computer costs
3,070
1,704
50
-
Legal and professional
151
-
-
-
Staff training
315
-
-
-
Repairs & maintenance
222
222
-
-
Other charitable expenditure
28
-
1
-
60,090
34,583
1,682
24,035		 Total
2021
£
89,065
4,174
306
271
526
57
590
4,159
14,777
38
-
664
4,824
151
315
444
29
120,390		 Total
2020
£
64,893
3,124
1,134
188
738
102
-
-
1,340
-
1,807
301
1,818
42
401
734
71
76,693

page 17

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

8
Charitable activities
Grant funding of activities
(see note 9)
Share of support costs (see
note 10)
Share of governance costs
(see note 10)
Analysis by fund
Unrestricted funds - general
Restricted funds
For the year ended 30 June 2020
Staff costs
Rates and water
Insurance
Light and heat
Telephone
Postage and stationery
Consultancy fees
Travel costs
Subscriptions
Computer costs
Legal and professional
Staff training
Repairs & maintenance
Other charitable expenditure
Grant funding of activities (see note
Share of support costs (see note 10)
Share of governance costs (see note		 1,500
42,180
1,955
105,725
11,186
94,539
105,725
9)

10)		 (Continued)
-
-
-
1,500
2,312
23,432
1,338
-
66,950
40,923
1,086
62
-
3,103
3,428
59,101
3,082
24,035
191,943
123,356
4,959
209
-
16,354
84,360
54,142
2,873
24,035
175,589
38,996
59,101
3,082
24,035
191,943
123,356
Beneficiary
Support
Awareness
and
Education
Research
Total
2020
£
£
£
£
38,630
26,263
-
64,893
1,562
1,562
-
3,124
567
567
-
1,134
94
94
-
188
568
170
-
738
83
19
-
102
-
1,340
-
1,340
208
1,599
-
1,807
270
-
31
301
1,294
524
-
1,818
42
-
-
42
197
204
-
401
486
248
-
734
70
-
1
71
44,071
32,590
32
76,693
2,312
-
-
2,312
20,781
20,142
-
40,923
1,741
1,687
-
3,428
68,905
54,419
32
123,356		 (Continued)
-
-
-
1,500
2,312
23,432
1,338
-
66,950
40,923
1,086
62
-
3,103
3,428
59,101
3,082
24,035
191,943
123,356
4,959
209
-
16,354
84,360
54,142
2,873
24,035
175,589
38,996
59,101
3,082
24,035
191,943
123,356
Beneficiary
Support
Awareness
and
Education
Research
Total
2020
£
£
£
£
38,630
26,263
-
64,893
1,562
1,562
-
3,124
567
567
-
1,134
94
94
-
188
568
170
-
738
83
19
-
102
-
1,340
-
1,340
208
1,599
-
1,807
270
-
31
301
1,294
524
-
1,818
42
-
-
42
197
204
-
401
486
248
-
734
70
-
1
71
44,071
32,590
32
76,693
2,312
-
-
2,312
20,781
20,142
-
40,923
1,741
1,687
-
3,428
68,905
54,419
32
123,356
123,356
84,360
38,996
123,356
Total
2020
£
64,893
3,124
1,134
188
738
102
1,340
1,807
301
1,818
42
401
734
71
76,693
2,312
40,923
3,428
123,356

page 18

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

8 Charitable activities

Charitable activities
Analysis by fund
Unrestricted funds - general
Restricted funds		 53,021
15,884
68,905		 31,307
23,112
54,419		 (Continued)
32
84,360
-
38,996
32
123,356		 (Continued)
32
84,360
-
38,996
32
123,356
123,356

9 Grants payable

Grants to individuals
Support costs
Support costs Governance
costs
£
£
Staff costs
51,294
-
Depreciation
1,468
-
Insurance
1,006
-
Telephone
371
-
Postage and stationery
63
-
IT Costs
6,042
-
Training and recruitment
costs
1,251
-
Premises expenses
4,820
-
Repairs, maintenance and
equipment
66
-
Subscriptions
249
-
Travel and subsistence
129
-
Sundry costs
191
-
Legal and professional
-
13
Accountancy fees
-
3,000
Trustees meeting costs
-
-
Other g overnance costs
-
90
66,950
3,103		 Beneficiary
Support
Beneficiary
Support
2021
2020
£
£
1,500
2,312
1,500
2,312
2021Support costs
Governance
costs
2020
£
£
£
£
51,294
31,016
-
31,016
1,468
1,310
-
1,310
1,006
751
-
751
371
201
-
201
63
38
-
38
6,042
-
-
-
1,251
520
-
520
4,820
4,501
-
4,501
66
2,075
-
2,075
249
335
-
335
129
176
-
176
191
-
-
-
13
-
39
39
3,000
-
2,820
2,820
-
-
155
155
90
-
414
414
70,053
40,923
3,428
44,351		 Beneficiary
Support
Beneficiary
Support
2021
2020
£
£
1,500
2,312
1,500
2,312
2021Support costs
Governance
costs
2020
£
£
£
£
51,294
31,016
-
31,016
1,468
1,310
-
1,310
1,006
751
-
751
371
201
-
201
63
38
-
38
6,042
-
-
-
1,251
520
-
520
4,820
4,501
-
4,501
66
2,075
-
2,075
249
335
-
335
129
176
-
176
191
-
-
-
13
-
39
39
3,000
-
2,820
2,820
-
-
155
155
90
-
414
414
70,053
40,923
3,428
44,351
2,312
2020
£
31,016
1,310
751
201
38
-
520
4,501
2,075
335
176
-
39
2,820
155
414
44,351

10 Support costs

page 19

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

10 Support costs (Continued)
Analysed between
Charitable activities 66,950 3,103 70,053 40,923 3,428 44,351

Governance costs include amounts payable to the independent examiner of £3,000 (2020: £3,000) in respect of their independent examination.

11 Trustees

None of the trustees (or any persons connected with them) received any remuneration or benefits from the charity during the year.

12 Employees

The average monthly number of employees during the year was:

2021 2020
Number Number
24 21
Employment costs 2021 2020
£ £
Wages and salaries 447,727 377,324
Social security costs 28,747 24,309
Other pension costs 8,734 7,490
485,208 409,123

Key Management Personnel

The trustees consider four (2020: five) staff members to be Key Management Personnel, the total benefit paid to them is £ 117,581 (20 20 : £ 132,555 ).

There were no employees whose annual remuneration was more than £60,000.

page 20

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

13
Tangible fixed assets
Plant and
machinery
Fixtures, fittings
& equipment
Motor vehicles
£
£
£
Cost
At 1 July 2020
28,932
13,200
27,026
Additions
1,383
-
-
Disposals
(2,852)
-
-
At 30 June 2021
27,463
13,200
27,026
Depreciation and impairment
At 1 July 2020
22,665
3,960
18,170
Depreciation charged in the year
4,407
1,320
1,771
Eliminated in respect of disposals
(2,852)
-
-
At 30 June 2021
24,220
5,280
19,941
Carrying amount
At 30 June 2021
3,243
7,920
7,085
At 30 June 2020
6,268
9,240
8,856
14
Stocks
2021
£
Finished goods and goods for resale
671
15
Debtors
2021
Amounts falling due within one year:
£
Trade debtors
3,219
Other debtors
37,163
Prepayments and accrued income
19,663
60,045		 Total
£
69,158
1,383
(2,852)
67,689
44,795
7,498
(2,852)
49,441
18,248
24,364
2020
£
939
2020
£
356
80,363
19,112
99,831

page 21

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2021

16
Loans and overdrafts
Bank loans
Payable within one year
Payable after one year
17
Finance lease commitments
Future minimum lease payments due under finance leases:
Within one year
Less: future finance charges
18
Creditors: amounts falling due within one year
Notes
Bank loans
16
Obligations under finance leases
17
Trade creditors
Other creditors
Accruals and deferred income
19
Creditors: amounts falling due after more than one year
Notes
Bank loans
16		 2021
£
50,000
5,517
44,483
2021
£
-
-
-
2021
£
5,517
-
10,929
11,522
3,415
31,383
2021
£
44,483		 2020
£
-
-
-
2020
£
7,811
(211)
7,600
2020
£
-
7,600
33,377
7,460
3,787
52,224
2020
£
-

page 22

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

20 Retirement benefit schemes

Defined contribution schemes

The charity operates a defined contribution pension scheme for all qualifying employees. The assets of the scheme are held separately from those of the charity in an independently administered fund.

The charge to profit or loss in respect of defined contribution schemes was £8,734 (2020 - £7,490).

21 Restricted funds

The income funds of the charity include restricted funds comprising the following unexpended balances of donations and grants held on trust for specific purposes:

Movement in funds
Balance at
1 July 2020
Incoming
resources
Resource
expended
£
£
£
Research
500
-
(500)
ScHARR Economic Survey
35,712
-
-
Education & Awareness
10,950
10,000
(10,301)
Family Weekend
24,355
(1,342)
(21,893)
Support Services (formerly named
Beneficiary Services)
42,603
60,000
(64,367)
Technology
3,014
-
-
Digital Support Costs
10,512
-
(10,512)
Core Costs
6,938
97,587
(103,380)
New Born Screening
20,000
19,048
(5,271)
Social Enterprises
-
38,713
(35,413)
Alexander's Disease
-
1,200
-
154,584
225,206
(251,637)
Movement in
funds
Balance at
1 July 2019
Incoming
resources
Resource
expended
£
£
£
Research
-
500
-
ScHARR Economic Survey
35,712
-
-
Monitoring & Evaluation Officer
5,000
-
-
Education & Awareness
13,514
-
(2,564)
Family Weekend
-
24,355
-
Support Services (formerly named
Beneficiary Services)
-
53,000
(14,721)
Technology
-
6,043
-
Digital Support Costs
-
17,697
(7,185)
Core Costs
-
24,678
(17,740)
New Born Screening
-
20,000
-
54,226
146,273
(42,210)		 Transfer
Balance at
30 June 2021
£
£
-
-
-
35,712
-
10,649
-
1,120
(710)
37,526
-
3,014
-
-
(673)
472
-
33,777
(3,300)
-
-
1,200
(4,683)
123,470
Transfer
Balance at
30 June 2020
£
£
-
500
-
35,712
(5,000)
-
-
10,950
-
24,355
4,324
42,603
(3,029)
3,014
-
10,512
-
6,938
-
20,000
(3,705)
154,584		 Transfer
Balance at
30 June 2021
£
£
-
-
-
35,712
-
10,649
-
1,120
(710)
37,526
-
3,014
-
-
(673)
472
-
33,777
(3,300)
-
-
1,200
(4,683)
123,470
Transfer
Balance at
30 June 2020
£
£
-
500
-
35,712
(5,000)
-
-
10,950
-
24,355
4,324
42,603
(3,029)
3,014
-
10,512
-
6,938
-
20,000
(3,705)
154,584
154,584

page 23

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

21 Restricted funds

(Continued)

Research fund – A pool of funds to enable Alex TLC to contribute to and promote relevant and approved research projects.

ScHARR Economic Survey fund - Funding specifically reserved for a review of the economic survey commissioned for Alex TLC's original National Screening Committee application to add adreneoleukodystrophy to the UK new born screening programme.

Monitoring & Evaluation Officer - Funding to cover the appointment of a Monitoring & Evaluation Officer whose role is to demonstrate the impact of our work to beneficiaries for the public and our funders.

Education & Awareness – A fund for work undertaken to: 1. raise awareness of leukodystrophy both publicly and within the medical community 2. educate patients, their families and involved professionals to ensure best practice and equity in care for those affected by leukodystrophy.

Community Weekend fund – organisation of a service user conference incorporating formal and informal activities for all age groups, relevant speakers and workshops along with venue and hosting costs

Beneficiaries – A fund for work undertaken in the provision of support activities. The transfer out of this fund reflects the purchase of a fixed asset.

Technology - A fund to purchase Gift Aid stock processing technology and optimise charity shop income generation . The tills purchased have been capitalised so a transfer has been put through to represent the fund being spent.

Digital Support Costs - A fund for work undertaken to implement conversion of relevant Alex TLC activities to a digital format as part of our Covid-19 response strategy.

Core Costs - A pool of funds, generated through the emergency Covid-19 grants made available to the charity sector, to cover charitable core costs. The transfer out of this fund reflects the purchase of fixed assets.

New Born Screening Fund - A fund to cover the costs of Alex TLC's newborn screening campaign for adrenoleukodystrophy.

The Social Enterprise Support fund - a grant to support a pilot project exploring whether or not an online retail venture might be an additional profitable income stream. The transfer out of this fund reflects the Penge Refit costs.

Alexander's - a fund restricted to development of support tools specifically for those affected by Alexander's Disease .

22 Analysis of net assets between funds

Unrestricted
funds
Restricted
funds
2021
2021
£
£
Fund balances at 30
June 2021 are
represented by:
Tangible assets
18,248
-
Current assets/(liabilities)
205,137
126,698
Long term liabilities
(44,483)
-
178,902
126,698		 Total
Unrestricted
funds
Restricted
funds
2021
2020
2020
£
£
£
18,248
24,364
-
331,835
101,780
154,584
(44,483)
-
-
305,600
126,144
154,584		 Total
2020
£
24,364
256,364
-
280,728

page 24

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2021

23 Related party transactions

There were no disclosable related party transactions during the year (2020 - Nil ) .

24
Cash generated from operations
Surplus for the year
Adjustments for:
Investment income recognised in statement of financial activities
Depreciation and impairment of tangible fixed assets
Movements in working capital:
Decrease in stocks
Decrease/(increase) in debtors
(Decrease)/increase in creditors
Cash generated from operations
25
Analysis of changes in net funds
At 1
Cash at bank and in hand
Loans falling due within one year
Loans falling due after more than one year
Obligations under finance leases		 2021
2020
£
£
24,872
178,927
(23)
(134)
7,499
9,187
268
396
39,786
(52,817)
(18,758)
4,922
53,644
140,481
July 2020
Cash flows
At 30 June 2021
£
£
£
207,818
94,684
302,502
-
(5,517)
(5,517)
-
(44,483)
(44,483)
(7,600)
7,600
-
200,218
52,284
252,502

page 25