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2022-06-30-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 2022

ALEX, THE LEUKODYSTROPHY CHARITY

LEGAL AND ADMINISTRATIVE INFORMATION

Trustees L Milne
G Bridge
O Bostock
T Watkins
S Jimenez
G Metcalf
N Sarig
J Livingston (Appointed 15 May 2022)
I Idafar (Appointed 6 February 2022)
E Hadfield-Hudson (Appointed 11 February 2023)
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
Statement of cash flows 9
Notes to the financial statements 10 - 24

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT)

FOR THE YEAR ENDED 30 JUNE 2022

The trustees present their annual report and financial statements for the year ended 30 June 2022.

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 income challenges experienced as a whole by the sector, Alex TLC experienced significant growth during the period, and took on additional charitable activities and projects.

As part of this growth, we prioritised promoting our work, publishing our 2022 Impact Report. It also seemed prudent to publicly reflect our national status and we registered with the Office of the Scottish Charity Regulator.

Following on from the previous year, we used the data and experiences collected to review internal processes and staff structure. We introduced a new reporting framework including regular departmental and team meetings with a full review of our Key Performance Indicators. These have resulted in providing the Charity with a clearer pathway for identifying successes and areas of risk. We also introduced a new salary framework and performance-related bonus scheme and engaged the services of an experienced HR consultant to meet the needs of our growing workforce.

Although the retail business experienced several premise-related challenges resulting in closure of one premises for three months, this was countered by overall increases in retail income, helped by the grants and additional staff available from the Kickstart initiative and successful insurance claims. Overall contribution from the shops was £71,145 for the year, compared with £41,886 for 2021 when they were still struggling with the Covid restrictions. Voluntary donations increased significantly in the year to £94,350 (2021: £30,424) but grant income was disappointing at £91,374,compared to £180,581 in the 2021 year. This reflects the increased competition for increasingly scarce resources within the charity sector. However, overall, our reserve levels grew with reduced expenditure mitigating the loss of grant income.

As part of our investment in future growth, we decided to invest heavily in fundraising staff, employing a Fundraising Manager and Fundraising Assistant to implement a revised fundraising strategy including recruitment of a team of voluntary grant fundraisers. We also invested in consultancy services for larger grant bids, which we hope to see realised in the next financial year. We employed additional staff to the retail team, following successful use of the government Kickstart Scheme, and purchased an additional Gift Aid till. The Chief Financial Officer position remained vacant due to a continued national shortage of available candidates. To support the Accounts Manager and increase capacity for administrative tasks, we also employed an Accounts and Administration Assistant.

page 1

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2022

Our priorities for the period continued to be ensuring that anyone with a leukodystrophy who needs us can find us and widening our reach. With this in mind, we have continued investing in digital marketing consultancy resulting in improved Search Engine Optimisation, continuous assessment of our website and use of social media, alongside trials of paid social media advertising. Audience levels and engagement were closely monitored within our new KPI framework, and we anticipated and reacted to opportunities swiftly. We also engaged a digital marketing volunteer to promote the retail business and maintain our LinkedIn account.

We continued to work with NHS England as the lead patient and public voice (PPV) representative for the Inherited White Matter Disorder Diagnosis and Management Service and accompanying clinical registry; and were invited to be involved in the review of the adult bone marrow transplant policy for adrenoleukodystrophy (ALD).

We progressed our campaign to include ALD in the UK new born screening programme, and collaborated with new peer, research and pharmaceutical organisations to increase our stakeholder network, becoming more involved with stakeholders interested in rarer conditions such as Alexander’s Disease and ALSP.

We maintained our involvement in the Lysosomal Storage Disorders Collaborative, New Born Screening Collaborative, Genetic Alliance Trustee Board, and joined the Neurological Alliance.

We were able to incorporate the Beneficiary Engagement Officer role within core provision and changed the job title to Engagement and Communications Officer. Staff and our community welcomed the return of our grant programme and in person home visits, although Zoom home visits have been maintained as a permanent feature.

During the period we welcomed 112 new beneficiaries (a 45% increase year on year), seeing a distinct increase in the numbers of new beneficiaries affected by conditions other than ALD (50% affected by ALD, 50% by other leukodystrophies), demonstrating that our investment in SEO consultancy was delivering real impact. We delivered 1,533 support conversations to 398 beneficiaries, demonstrating a 73% year on year increase. In terms of engagement and communications, we introduced a new format newsletter and, in recognition of our community’s desire for more researchrelated activities (our 2020 Impact Report respondents placed research as a priority in communications from Alex TLC), we introduced monthly research summaries in August 2021. A new communication strategy gave us a solid baseline for the new KPI framework, with significant spikes during activities such as Leukodystrophy Awareness month, Rare Disease Day and Alex TLC campaigns and activities.

These figures also clearly demonstrated the increased workload of our support and engagement team. As a result, we submitted several grant applications to recruit a Research Analyst and Counsellor (areas of need identified in our 2022 Impact Report as well as through our KPI framework).

CHARITABLE OBJECTIVES

Across the year Alex TLC staff:

page 2

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2022

We were able to progress several projects during the period which are detailed below:

NHS England Inherited White Matter Disorders (IWMD) Diagnostic and Management Service and Patient Registry – Further delays impacted roll out of this hugely important patient service, which is now scheduled for roll out in 2023. We became increasingly involved, developing our relationships with the commissioners, consultants and medical professionals delivering the project. As part of this partnership, we were invited to sit on the NHS service provider selection panel, and tasked with co-production of the patient information and registry pilot surveys with our PPV associates Metabolic Support UK. We were also recruited to the planning committee for mobilisation of the service including arrangements for Alex TLC staff to provide support at clinics. We moved our project to improve engagement with under-represented communities to this workstream having identified that working with the service will give the best opportunities for improvement and continue to work in partnership with service providers to develop appropriate resources.

New Born screening – In preparation for the 2023/24 review of our application to include ALD in the UK new born screening programme we held a digital New Born Screening Round Table event with eminent medical specialists from around the world. We also commissioned Sheffield Hallam University to publish a paper exploring the impact of childhood cerebral ALD on parents and carers. We also worked with Genetic Alliance to conduct a scoping study to confirm how adult males with ALD felt about new born screening. We continue to work with the New Born Screening Collaborative to highlight mutual concerns in the National Screening Committee’s assessment processes.

Support tools for children and young people – First drafts of a fully illustrated children’s book, designed to help parents and children up to 12 years old discuss and understand the implications of a sibling’s ALD diagnosis, were shared with our Steering Group. This will provide a template for a series of books focussed on other leukodystrophies and beneficiary cohorts.

Digital Support Services and Community Weekend 2021 – The impact of the relaxation of Covid restrictions was reflected in reduced visits (773, a 52% year on year reduction) to our Covid information page, which we continue to update. We delivered 17 digital support activities to 41 beneficiaries, which was similar to the previous period, however there was a definitive drop off towards the end of the reporting period demonstrating a decline in appetite. As a result, activities were reduced to one per month.

We held our 2021 Digital Community Weekend in November, funded by existing and new corporate stakeholders. Attendance was down on the previous year, yet the Impact Report showed how valued the event was for our community “Thank you for keeping us connected to developments in this terrible condition”, “Thank you to Alex TLC for putting together an excellent weekend”. Recorded presentations were viewed by 361 individuals on our YouTube channel.

Genetic counselling – We published the results of our project with an MSc Student in Genetic and Genomic Counselling to explore family communication following an ALD diagnosis within the UK. The study outlined the variety of challenges families faced in communicating a diagnosis to wider family members and has been used to communicate a new service to assist beneficiaries to talk to relatives about the genetic implications of a leukodystrophy diagnosis.

CHALLENGES

The cost-of-living crisis and increases in energy prices are a major concern for future expenditure, alongside retention of our growing workforce. We continued to operate without a Chief Financial Officer, having been unable to recruit a suitable candidate. Although a support role was provided by the treasurer, this still significantly impacted on the workload of the Accounts Manager and Chief Executive Officer, diminishing capacity for income generation, particularly grant income.

Three of our retail premises incurred major damages due to extreme weather and longstanding defects, with insurance claims and reimbursements not fully materialised during the reporting period.

We noted a decline in engagement within our peer support network, demonstrating a need to review and assess community involvement.

We identified a lack of expertise to optimise opportunities for publicity through press and media outlets.

page 3

ALEX, THE LEUKODYSTROPHY CHARITY

TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2022

FUTURE

We will look to increase staffing levels in order to input more meaningfully into research activities and provide additional mental health support for our community.

We will focus work priorities toward research and peer support.

We will continue to build and strengthen our stakeholder network, increasing our portfolio of corporate support and involvement with research organisations and collaboratives, recognising 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.

Financial review

At the balance sheet date, the charity had unrestricted funds of £250,769 (2021: £182,130) and restricted funds of £75,273 (2021: £123,470).

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 (£220,000). Thanks to strict budget controls and generous allowances, our reserve levels are now above this minimum level. However, increases in the cost of living, increased competition for grant funding and a growing portfolio of charitable activities are at risk of impacting levels severely for the next period.

FUTURE PLANS

Work areas for 2022/2023 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 (Resigned 11 February 2023)
O Bostock
T Watkins
S Jimenez
G Metcalf
N Sarig
J Livingston (Appointed 15 May 2022)
I Idafar (Appointed 6 February 2022)
E Hadfield-Hudson (Appointed 11 February 2023)

page 4

ALEX, THE LEUKODYSTROPHY CHARITY

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

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 report 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 2022.

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 2022

Unrestricted
Restricted
funds
funds
2022
2022
Notes
£
£
Income and endowments from:
Donations and grants
3
98,140
87,584
Other trading activities
4
701,903
699
Investments
5
57
-
Other income
6
3,915
-
Total income
804,015
88,283
Expenditure on:
Raising funds
7
658,175
483
Charitable activities
8
80,432
132,766
Total expenditure
738,607
133,249
Net incoming/(outgoing)
resources before transfers
65,408
(44,966)
Gross transfers between
funds
3,231
(3,231)
Net income/(expenditure) for the
year/
Net movement in funds
68,639
(48,197)
Fund balances at 1 July 2021
182,130
123,470
Fund balances at 30 June 2022
250,769
75,273		 Total
Unrestricted
Restricted
funds
funds
2022
2021
2021
£
£
£
185,724
24,512
225,206
702,602
482,238
-
57
23
-
3,915
-
-
892,298
506,773
225,206
658,658
439,116
76,048
213,198
16,354
175,589
871,856
455,470
251,637
20,442
51,303
(26,431)
-
4,683
(4,683)
20,442
55,986
(31,114)
305,600
126,144
154,584
326,042
182,130
123,470		 Total
2021
£
249,718
482,238
23
-
731,979
515,164
191,943
707,107
24,872
-
24,872
280,728
305,600

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 2022

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
17
Net current assets
Total assets less current liabilities
Creditors: amounts falling due after more
than one year
18
Net assets
Income funds
Restricted funds
20
Unrestricted funds - general		 2022
£
3,877
66,011
285,634
355,522
(38,045)		 £
43,398
317,477
360,875
(34,833)
326,042
75,273
250,769
326,042		 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

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 2022.

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 8

ALEX, THE LEUKODYSTROPHY CHARITY

STATEMENT OF CASH FLOWS

FOR THE YEAR ENDED 30 JUNE 2022

Notes
Cash flows from operating activities
Cash generated from operations
23
Investing activities
Purchase of tangible fixed assets
Proceeds on disposal 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 (used in)/generated from financing
activities
Net (decrease)/increase in cash and cash equivalents
Cash and cash equivalents at beginning of year
Cash and cash equivalents at end of year		 2022
£
(40,885)
11,000
57
(5,520)
-		 £
18,480
(29,828)
(5,520)
(16,868)
302,502
285,634		 2021
£
(1,383)
-
23
50,000
(7,600)		 £
53,644
(1,360)
42,400
94,684
207,818
302,502

page 9

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS

FOR THE YEAR ENDED 30 JUNE 2022

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 amounts 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 10

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

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 11

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 30 JUNE 2022

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.

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.

page 12

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

2 Critical accounting estimates and judgements

(Continued)

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

3 Donations and grants

Unrestricted
Restricted
funds
funds
general
2022
2022
£
£
Donations and gifts
83,920
10,962
Grants received
14,220
76,622
98,140
87,584		 Total
Unrestricted
Restricted
funds
funds
general
2022
2021
2021
£
£
£
94,882
23,512
6,912
90,842
1,000
218,294
185,724
24,512
225,206		 Total
2021
£
30,424
219,294
249,718

page 13

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

3
Donations and grants
Grants receivable for core
activities
Postcode Neighbour
BBC Children in Need
Minoryx Therapeutics
CAF
Contact a Family
National Lottery
The Hobson Charity
Garfield Weston Foundation
Global MSN
INTERESBA Sarigs
Discretion
Arnold Clark Community
Fund
Social Entrepreneur Support
Fund
The Baily Thomas
The Grace Trust
The Sir Jules Thorn
Charitable Trust
The Thomas Sivewright
Catto Charitable Trust
Affinia Therapeutics
Autobahn Therapeutics
CAF The Rest-Harrow
Trust
Ionis Pharmaceuticals
Leadiant Bioscience
Orchard Therapeutics
Passage Bio Inc
Poxel
Swanbio Therapeutics
The D'Oyly Carte
Charitable Trust
The Edward Gostling
Foundation
Vigil Neuroscience
Zedra Trust Comp Wo
Sylvia Adams CT
Lillie C Johnson Trust
Marsh Christian Trust
The Michael and Anna Wix
Charitable Trust
Other		 -
-
10,000
-
-
-
-
-
-
-
2,000
-
-
-
-
-
-
-
200
-
-
-
-
-
-
-
-
-
-
-
500
500
500
520
14,220		 -
-
-
-
-
-
-
15,000
-
-
-
-
-
-
-
-
720
3,596
-
9,893
2,500
7,500
2,500
728
3,611
4,000
5,000
11,574
5,000
5,000
-
-
-
-
76,622		 -
-
10,000
-
-
-
-
15,000
-
-
2,000
-
-
-
-
-
720
3,596
200
9,893
2,500
7,500
2,500
728
3,611
4,000
5,000
11,574
5,000
5,000
500
500
500
520
90,842		 -
-
-
-
-
-
-
-
-
-
-
-
-
1,000
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
1,000		 (Continued)
20,000
20,000
13,166
13,166
8,000
8,000
39,465
39,465
25,000
25,000
10,000
10,000
1,000
1,000
15,000
15,000
25,000
25,000
1,000
1,000
-
-
38,713
38,713
20,000
20,000
-
1,000
1,000
1,000
750
750
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
200
200
-
-
218,294
219,294		 (Continued)
20,000
20,000
13,166
13,166
8,000
8,000
39,465
39,465
25,000
25,000
10,000
10,000
1,000
1,000
15,000
15,000
25,000
25,000
1,000
1,000
-
-
38,713
38,713
20,000
20,000
-
1,000
1,000
1,000
750
750
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
200
200
-
-
218,294
219,294
219,294

page 14

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

4 Other trading activities

Unrestricted Restricted Total Unrestricted
funds funds funds
general general
2022 2022 2022 2021
£ £ £ £
Shop income 649,437 699 650,136 270,559
Shop income - government grants 52,466 52,466 211,679
Other trading activities 701,903 699 702,602 482,238
Investments
Unrestricted Unrestricted
funds funds
general general
2022 2021
£ £
Interest receivable 57 23
Other income
Unrestricted Total
funds
general
2022 2021
£ £
Net gain on disposal of tangible fixed assets 3,915 -
Raising funds
Unrestricted Restricted Total Unrestricted Restricted Total
funds funds funds funds
general general
2022 2022 2022 2021 2021 2021
£ £ £ £ £ £
Fundraising and publicity
Other fundraising costs 10,578 - 10,578 5,919 1,725 7,644
Staff costs 28,980 - 28,980 1,203 36,607 37,810
Fundraising and publicity 39,558 - 39,558 7,122 38,332 45,454

5 Investments

6 Other income

7 Raising funds

page 15

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

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		 241,287
369,187
8,143
618,617
658,175		 483
-
-
483
483		 241,770
369,187
8,143
619,100
658,658		 141,766
284,197
6,031
431,994
439,116		 (Continued)
14,874
156,640
22,842
307,039
-
6,031
37,716
469,710
76,048
515,164		 (Continued)
14,874
156,640
22,842
307,039
-
6,031
37,716
469,710
76,048
515,164
469,710
515,164

8 Charitable activities

Support
Services
Awareness
and
Education
Research
Community
Weekend
2022
2022
2022
2022
£
£
£
£
Staff costs
63,428
22,806
1,401
13,847
Rates and water
1,792
1,792
-
-
Insurance
87
87
-
-
Light and heat
128
128
-
-
Telephone
229
183
-
-
Postage and stationery
361
121
-
-
Advertising
-
64
-
-
Community Weekend
-
-
-
-
Consultancy fees
240
600
32,384
18,138
Conference costs
62
406
252
-
Travel costs
-
34
-
-
Subscriptions
599
250
29
-
Computer costs
1,266
1,298
114
154
Legal and professional
10
-
-
-
Staff training
97
97
-
-
Repairs & maintenance
1,159
1,159
-
-
Other charitable expenditure
69
-
-
574
69,527
29,025
34,180
32,713		 Total
2022
£
101,482
3,584
174
256
412
482
64
-
51,362
720
34
878
2,832
10
194
2,318
643
165,445		 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

page 16

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

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		 2,405
25,634
2,028
99,594
43,332
56,262
99,594		 -
10,505
832
40,362
30,502
9,860
40,362		 -
5,883
466
40,529
6,598
33,931
40,529		 -
-
-
32,713
-
32,713
32,713		 (Continued)
2,405
1,500
42,022
66,950
3,326
3,103
213,198
191,943
80,432
16,354
132,766
175,589
213,198
191,943		 (Continued)
2,405
1,500
42,022
66,950
3,326
3,103
213,198
191,943
80,432
16,354
132,766
175,589
213,198
191,943
191,943
16,354
175,589
191,943

For the year ended 30 June 2021

Support
Services
Awareness
and
Education
Research
Community
Weekend
£
£
£
£
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
-
-
-
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
Grant funding of activities (see note 9)
1,500
-
-
-
Share of support costs (see note 10)
42,180
23,432
1,338
-
Share of governance costs (see note 10)
1,955
1,086
62
-
105,725
59,101
3,082
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
1,500
66,950
3,103
191,943

page 17

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

8
Charitable activities
Analysis by fund
Unrestricted funds - general
Restricted funds
9
Grants payable		 11,186
94,539
105,725		 4,959
54,142
59,101		 209
2,873
3,082		 (Continued)
-
16,354
24,035
175,589
24,035
191,943		 (Continued)
-
16,354
24,035
175,589
24,035
191,943
191,943
Support
Services
2022
£
Grants to individuals
2,405
2,405		 Support
Services
2021
£
1,500
1,500

page 18

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

10 Support costs

Support costs
Governance
costs
£
£
Staff costs
23,199
-
Depreciation
508
-
Insurance
981
-
Telephone
196
-
Postage and stationery
742
-
IT Costs
3,257
-
Training and recruitment
costs
4,370
-
Premises expenses
4,118
-
Repairs, maintenance and
equipment
2,041
-
Subscriptions
411
-
Travel and subsistence
339
-
Sundry costs
-
-
Bank Charges
43
-
Bank Loan interest paid
1,211
-
Consultancy fee
606
-
Legal and professional
-
26
Accountancy fees
-
3,300
Other governance costs
-
-
42,022
3,326
Analysed between
Charitable activities
42,022
3,326		 2022 Support costs
Governance
costs
£
£
£
23,199
51,294
-
508
1,468
-
981
1,006
-
196
371
-
742
63
-
3,257
6,042
-
4,370
1,251
-
4,118
4,820
-
2,041
66
-
411
249
-
339
129
-
-
191
-
43
-
-
1,211
-
-
606
-
-
26
-
13
3,300
-
3,000
-
-
90
45,348
66,950
3,103
45,348
66,950
3,103		 2021
£
51,294
1,468
1,006
371
63
6,042
1,251
4,820
66
249
129
191
-
-
-
13
3,000
90
70,053
70,053

Governance costs include amounts payable to the independent examiner of £3,300 (2021: £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:

2022 2021
Number Number
25 24

page 19

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

12
Employees
Employment costs
Wages and salaries
Social security costs
Other pension costs		 (Continued)
2022
2021
£
£
482,801
447,727
30,934
28,747
9,113
8,734
522,848
485,208		 (Continued)
2022
2021
£
£
482,801
447,727
30,934
28,747
9,113
8,734
522,848
485,208
485,208

Key Management Personnel

The trustees consider four (2021: four) staff members to be Key Management Personnel, the total benefit paid to them is £126,335 (2021: £117,581).

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

13 Tangible fixed assets

Plant and
machinery
Fixtures, fittings
& equipment
Motor vehicles
£
£
£
Cost
At 1 July 2021
27,464
13,200
27,025
Additions
3,921
-
36,964
Disposals
-
-
(27,025)
At 30 June 2022
31,385
13,200
36,964
Depreciation and impairment
At 1 July 2021
24,220
5,280
19,940
Depreciation charged in the year
1,839
1,320
5,492
Eliminated in respect of disposals
-
-
(19,940)
At 30 June 2022
26,059
6,600
5,492
Carrying amount
At 30 June 2022
5,326
6,600
31,472
At 30 June 2021
3,243
7,920
7,085
14
Stocks
2022
£
Finished goods and goods for resale
3,877		 Total
£
67,689
40,885
(27,025)
81,549
49,440
8,651
(19,940)
38,151
43,398
18,248
2021
£
671

page 20

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

15
Debtors
Amounts falling due within one year:
Trade debtors
Other debtors
Prepayments and accrued income
16
Loans and overdrafts
Bank loans
Payable within one year
Payable after one year
17
Creditors: amounts falling due within one year
Notes
Bank loans
16
Trade creditors
Other creditors
Accruals and deferred income
18
Creditors: amounts falling due after more than one year
Notes
Bank loans
16
19
Retirement benefit schemes		 2022
£
4,795
23,218
37,998
66,011
2022
£
44,480
9,647
34,833
2022
£
9,647
12,431
12,214
3,753
38,045
2022
£
34,833		 2021
£
3,219
37,163
19,663
60,045
2021
£
50,000
5,517
44,483
2021
£
5,517
10,929
11,522
3,415
31,383
2021
£
44,483

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 £9,113 (2021 - £8,734).

page 21

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

20 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:

Balance at
1 July 2020
£
Research
500
ScHARR Economic Survey
35,712
Education & Awareness
10,950
Family Weekend
24,355
Support Services
42,603
Technology
3,014
Digital Support Costs
10,512
Core Costs
6,938
New Born Screening
20,000
Children's Support Tools
-
Covid Support Grant
-
Alexander's Disease
-
154,584		 Movement in funds
Incoming
resources
Resource
expended
£
£
-
(500)
-
-
10,000
(10,301)
(1,342)
(21,893)
60,000
(64,367)
-
-
-
(10,512)
97,587
(103,380)
19,048
(5,271)
-
-
38,713
(35,413)
1,200
-
225,206
(251,637)		 Transfer
Balance at
1 July 2021
£
£
-
-
-
35,712
-
10,649
-
1,120
(710)
37,526
-
3,014
-
-
(673)
472
-
33,777
-
-
(3,300)
-
-
1,200
(4,683)
123,470		 Movement in funds
Incoming
resources
Resource
expended
£
£
1,402
(1,402)
-
-
5,000
(5,847)
31,594
(32,714)
40,574
(57,051)
-
(482)
-
-
-
(472)
-
(32,463)
9,014
(2,818)
699
-
-
-
88,283
(133,249)		 Transfer
Balance at
30 June 2022
£
£
-
-
(35,712)
-
(7,291)
2,511
-
-
-
21,049
(2,532)
-
-
-
-
-
35,712
37,026
7,291
13,487
(699)
-
-
1,200
(3,231)
75,273		 Transfer
Balance at
30 June 2022
£
£
-
-
(35,712)
-
(7,291)
2,511
-
-
-
21,049
(2,532)
-
-
-
-
-
35,712
37,026
7,291
13,487
(699)
-
-
1,200
(3,231)
75,273
75,273

page 22

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

20 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.

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

Support Services – A fund for work undertaken in the provision of support activities.

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.

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

Covid Support Grant - a grant to support a pilot project exploring whether or not an online retail venture might be an additional profitable income stream.

Children's Support Tools fund - A fund for development of resources to assist children and young people to understand their or a loved one's diagnosis and prognosis.

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

page 23

ALEX, THE LEUKODYSTROPHY CHARITY

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)

FOR THE YEAR ENDED 30 JUNE 2022

21
Analysis of net assets between funds
Unrestricted
funds
Restricted
funds
2022
2022
£
£
Fund balances at 30
June 2022 are
represented by:
Tangible assets
43,398
-
Current assets/(liabilities)
242,204
75,273
Long term liabilities
(34,833)
-
250,769
75,273		 Total
Unrestricted
funds
Restricted
funds
2022
2021
2021
£
£
£
43,398
18,248
-
317,477
205,137
126,698
(34,833)
(44,483)
-
326,042
178,902
126,698		 Total
2021
£
18,248
331,835
(44,483)
305,600

22 Related party transactions

There were no disclosable related party transactions during the year (2021 - Nil).

23
Cash generated from operations
Surplus for the year
Adjustments for:
Investment income recognised in statement of financial activities
Gain on disposal of tangible fixed assets
Depreciation and impairment of tangible fixed assets
Movements in working capital:
(Increase)/decrease in stocks
(Increase)/decrease in debtors
Increase/(decrease) in creditors
Cash generated from operations
24
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		 2022
2021
£
£
20,442
24,872
(57)
(23)
(3,915)
-
8,651
7,499
(3,206)
268
(5,966)
39,786
2,531
(18,758)
18,480
53,644
July 2021
Cash flows
At 30 June 2022
£
£
£
302,502
(16,868)
285,634
(5,517)
(4,130)
(9,647)
(44,483)
9,650
(34,833)
252,502
(11,348)
241,154

page 24