**Charity registration number 1106008 (England and Wales) Charity registration number SCO51539 (Scotland) Company registration number 05142341 (England and Wales)**
**ALEX, THE LEUKODYSTROPHY CHARITY**
**ANNUAL REPORT AND FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2023**
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **LEGAL AND ADMINISTRATIVE INFORMATION**
|**Trustees**|L Milne||
|---|---|---|
||G Bridge||
||O Bostock||
||T Watkins||
||G Metcalf||
||J Livingston||
||I Idafar||
||E Hadfield-Hudson|(Appointed 11 February 2023)|
||K Amber|(Appointed 9 August 2023)|
||T Sandys-Winsch|(Appointed 11 October 2023)|
||G Sarig|(Appointed 4 January 2024)|
|**Secretary**|Sara Hunt||
|**Charity number (England and Wales)**|1106008||
|**Charity number (Scotland)**|SCO51539||
|**Company number**|05142341||
|**Registered office**|45 Peckham High Street||
||London||
||SE15 5EB||
|**Auditor**|Richard Place Dobson Services Limited||
||Ground Floor||
||1 - 7 Station Road||
||Crawley||
||West Sussex||
||RH10 1HT||
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **CONTENTS**
||**Page**|
|---|---|
|Trustees report|1 - 5|
|Statement of trustees responsibilities|6|
|Independent auditor's report|7 - 9|
|Statement of financial activities|10 - 11|
|Balance sheet|12|
|Statement of cash flows|13|
|Notes to the financial statements|14 - 27|
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
The trustees present their annual report and financial statements for the year ended 30 June 2023.
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, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 (as amended) 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 relief of sickness of people with leukodystrophy (also known as Inherited White Matter Disorders) and their parents and carers;
- to promote medical research into leukodystrophy and the publication of useful results of such research for the benefit of the public; and
- to advance the education of the public in leukodystrophy.
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**
Alex TLC continued to build on the growth experienced the previous year, taking on additional staff and activities, finalising projects, and cementing our position as the patient voice for the UK leukodystrophy community.
During the period we welcomed 121 new beneficiaries (an 8% increase year on year) with 11 different conditions, bringing the total number of conditions supported to 21 and delivered 1,353 support activities to 412 beneficiaries. Our community communications continued to strengthen with our newsletters achieving a 40% open rate, a year-on-year rise of 10%, and increased engagement across all social media channels. Website visits dropped year on year due to new regulations regarding cookies and consent.
We published our biennial 2022 Impact Report reflecting the views of 74 members of our community. The Report demonstrated that respondents continue to find Alex TLC their most important source of support, and that our services are relevant, professional, high quality and useful: �A life line for our family� �For a small charity, the support is excellent.� �We would have been lost without (Alex TLC) ��
Our Impact Report identified two priority areas for our community: research and concerns around mental health support. Alongside data trends from our new reporting structure this confirmed the need for additional support staff. As a result, we successfully applied for grants to employ a research analyst and a counsellor, with both posts filled early in 2023.
We launched a new research strategy in conjunction with the employment of our Research Analyst. Key elements included:
monthly research summaries for our community in plain English, ensuring they are accessible and user-friendly partnership with Leukolabs, the UK�s only research collaborative for leukodystrophies based in York University improved relationship building with key research organisations and pharmaceutical companies
Similarly, our BACP (British Association for Counselling and Psychotherapy) approved Counsellor was a welcome addition to the team with session spaces quickly filling up and positive feedback from those using the service � a survey reported that 100% had experienced improvements in how they felt they were coping with their/a loved one�s leukodystrophy diagnosis.
page 1
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED)** _**FOR THE YEAR ENDED 30 JUNE 2023**_
We held our first in person Community Weekend event since before Covid, and also our first event welcoming those affected by all leukodystrophies, bringing together 114 beneficiaries and 15 medical professionals and scientists for a weekend of information and presentations, peer support, condition management and relationship building activities. �I thought the event was brilliant. It was great to see so many individuals and families having the time to talk to others and learn from different professionals. Despite the challenges faced by many there, there was a real sense of positivity as people made connections and shared their stories.� �We really loved attending. There was a great sense of community and shared warmth and care between everyone attending. A really positive event. Thank you.� �The presentations and discussions amongst the health care professionals were very informative�. Community Weekend Impact Report 2023.
Support for the event generated from our expanded portfolio of corporate stakeholders, alongside increased attendance numbers, confirmed our expanded remit to all leukodystrophy conditions has translated into increased opportunities for growth.
We took a strategic decision to move our online peer support network from Health Unlocked to a new Facebook group which encouraged increased membership and engagement.
We introduced quarterly Steering Group meetings to encourage engagement and ensure project development has a robust structure which demonstrates our commitment to community involvement and constructive use of community feedback.
We also introduced a monthly �Ask the Community� email where community members can ask for advice from peers, which has led to increased numbers of peer-to-peer connections.
We introduced small regional face to face events, holding two in the year, for a small number of beneficiaries to meet and enjoy a local attraction and lunch together, hosted by support staff. �I was anxious about going until I met the other families. I laughed all day until my cheeks hurt. I didn�t want the day to end as I had finally found a new group of people just like me. I�m so happy to be a part of the Alex family and can�t wait to see them all again.�. Feedback from attendee.
We presented a poster at the British Paediatric Neurology Association highlighting our partnership with the NHS England Inherited White Matter Disorders Diagnostic and Management Service.
We represented patients in the working group proposing a change in NHS commissioning policy to allow adults with cerebral adrenoleukodystrophy (ALD) access to bone marrow transplant treatment, at the time only available to patients up to the age of 18.
Alex TLC joined the Eurordis Rare Neurological Disease European Reference Network as an ePAG (Patient Advocate Group) member, ensuring UK leukodystrophy patients are represented at European level, and that our resources and experiences are shared for the benefit of those outside the UK.
As part of our strategy to improve Search Engine Optimisation we undertook a full review of our current website, taking the decision to redesign the site to improve user journeys and optimise our online visibility. Our Steering Group has been regularly involved in development, and the project is due for completion in March 2024.The fundraising team developed new community and corporate fundraising guides packed with ideas and case studies to add to our suite of fundraising resources.
In response to our growth and higher numbers of staff, we engaged a new IT company to ensure our systems were up to date and secure. We initiated a Cyber insurance policy and also began the process of Cyber Essentials accreditation to demonstrate our commitment to digital security.
The retail business continued to improve and the overall contribution from our five charity shops was £77,399 (2022: £71,145), seeing an almost 9% increase year on year. Investment in additional fundraising staff resulted in an increase in donations and fundraising income to £100,707 (2022: £94,350), an increase of 7%. Grant income saw a substantial increase to £156,755 (2022: £65,902), an increase of 138%, largely due to funding secured for our Community Weekend event and our two new posts.
Due to the above substantial investment in our charitable objectives, the organisation saw a reduction in unrestricted reserves of £16,664 to £234,105.
page 2
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED)** _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **Charitable objectives**
Across the year Alex TLC staff:
- welcomed 121 new beneficiaries, including 32 patients with ALD, 24 with other leukodystrophy conditions, 21 patients waiting for confirmation of their diagnosis, and 44 unaffected family members (such as parents, carers, siblings)
- delivered 1,353 support conversations including 146 home visits (in person and on zoom), 27 referrals and provision of advocacy at 30 professional meetings
- delivered 64 counselling sessions
- attracted 95 members to our new Facebook peer support group connected 56 members of our community together for peer support delivered 11 digital peer networking sessions to 51 beneficiaries granted £2,882 to beneficiaries in need
- presented at 20 events, including ALD Connect, Imperial London, Rare Disease Day Westminster event, London School of Paediatrics, United Leukodystrophy Foundation, Leukolabs
- attended 15 stakeholder conferences including Neurological Alliance, British Paediatric Neurology Association, Eurordis Members Meeting
- were involved in 250 stakeholder meetings including NHS England, Genetic Alliance, NICE, Medics for Rare Diseases, Rare Revolutions
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** � The Service was mobilised during the period and support staff worked closely with clinic leads to provide patient support. Arrangements have been made for support staff to attend in-person clinics where possible, and Alex TLC literature has been distributed to all centres and used to encourage patients to access our support services. A link to Alex TLC�s website has been included on all centre website pages, and we were asked to provide a dedicated page on the Alex TLC website for Service and Registry news. We continued to work closely on development of the Patient Registry, which is due for completion in 2024. Our partnership with the IWMD Service is also an integral element to our strategy to improve diversity within our Alex TLC community.
**New Born Screening** � In preparation for the review of our application to include ALD in the UK new born screening programme we held a New Born Screening Round Table event at our Community Weekend with eminent medical specialists from around the world. Our study with Sheffield Hallam University exploring the impact of childhood cerebral ALD on parents and carers was peer reviewed and recommended for publication by the journal Child: health, care and development. We also completed our scoping study with Genetic Alliance to confirm how adult males with ALD felt about new born screening, resulting in 100% positive reactions.
**Support tools for children and young people** � we launched our first support resource for Rare Disease Day (28[th ] February 2023), �When My Brother Got Ill � A Story of Adrenoleukodystrophy (ALD)�, a fully illustrated story book to help young siblings of boys with Childhood Cerebral ALD understand a brother�s diagnosis and develop coping mechanisms. In the four months since publication 49 hard copies were ordered and 76 people viewed the online version. Feedback included ��this is very relatable to our family.� �It showed them it was ok to feel how they were feeling about the situation��
## **Challenges**
The cost of living crisis and increases in energy prices continued to be 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.
We identified a lack of expertise to optimise opportunities for publicity through press and media outlets, as well as optimising social media reach and engagement.
## **Future**
The growth experienced over the past two years has been welcomed by our community, but we now need to stabilise our workload and our finances in order to ensure future sustainability at these levels.
page 3
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED)** _**FOR THE YEAR ENDED 30 JUNE 2023**_
We will continue to build and strengthen our stakeholder network, recognising the benefits this has brought in the past year and optimising our new Research Analyst role in our engagement with research and pharmaceutical organisations.
Following the success of our Community Weekend event, and feedback from patient and professional attendees, we will work towards holding this event annually.
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 £234,105 (2022: £250,769) and restricted funds of £59,351 (2022: £75,273).
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 (£240,000).
We do expect a further drop in reserves in 2023/24 as we invest further in our charitable activities.
## **Plans for future periods**
Work areas for 2023/2024 include:
- confirmation of honorary contracts in order to provide in-person support for patients, families, and carers at NHSE IWMD clinics annual Community Weekend event launch our new website
implement a strategy to cement our position as the umbrella organisation for leukodystrophies in the UK development of a sustainability policy
## **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 G Bridge L Winn (Resigned 11 February 2023) O Bostock T Watkins S Jimenez (Resigned 11 February 2024) G Metcalf N Sarig (Resigned 15 October 2023) J Livingston I Idafar E Hadfield-Hudson (Appointed 11 February 2023) K Amber (Appointed 9 August 2023) T Sandys-Winsch (Appointed 11 October 2023) G Sarig (Appointed 4 January 2024)
page 4
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **TRUSTEES REPORT (INCLUDING DIRECTORS' REPORT) (CONTINUED)** _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **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.
## **Day to day operations**
The trustees delegate control of day-to-day operations to the Chief Executive Officer who provides a quarterly report and key performance indicators at Board Meetings. Senior Management and Team meetings are held monthly to review strategy and projects and discuss new opportunities and challenges, which feed into these reports.
## **Risk**
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 charity maintains a Risk Register. This is managed by the Trustee Risk Sub-Committee who present priority risks and proposed mitigations at quarterly Board meetings for approval. Currently our priority risk is appointment of a new Chair from September 2024 due to the end of the existing Chair�s term. A Sub-Committee has been formed to implement an approved strategy for recruitment.
This report has been prepared in accordance with the special provisions of part 15 of Companies Act 2006 relating to small companies.
The trustees report was approved by the Board of Trustees.
_Iraj Idafar_ Ira j Id afar(M ar 21,2 024 11:34 GMT) .............................. ... ........ ................... L Milne I Idafar **Trustee Trustee** 21/03/2024 Date: .............................................
page 5
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **STATEMENT OF TRUSTEES RESPONSIBILITIES**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
The trustees, who are also the directors of Alex, The Leukodystrophy Charity for the purpose of company law, are responsible for preparing the Trustees Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
Company Law requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charitable company for that year.
In preparing these financial statements, the trustees are required to:
- select suitable accounting policies and then apply them consistently;
- observe the methods and principles in the Charities SORP;
- make judgements and estimates that are reasonable and prudent;
- state whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements; and
- prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation.
The trustees are responsible for keeping adequate accounting records that disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and the Charities Accounts (Scotland) Regulations 2006 (as amended). They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
page 6
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **INDEPENDENT AUDITOR'S REPORT**
## **TO THE TRUSTEES OF ALEX, THE LEUKODYSTROPHY CHARITY**
## **Opinion**
We have audited the financial statements of Alex, The Leukodystrophy Charity (the �charity�) for the year ended 30 June 2023 which comprise the statement of financial activities, the balance sheet, the statement of cash flows and notes to the financial statements, including significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 _The Financial Reporting Standard applicable in the UK and Republic of Ireland_ (United Kingdom Generally Accepted Accounting Practice).
- In our opinion, the financial statements:
- give a true and fair view of the state of the charitable company's affairs as at 30 June 2023 and of its incoming resources and application of resources, for the year then ended;
- have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
- have been prepared in accordance with the requirements of the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and regulation 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended).
## **Basis for opinion**
We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the _Auditor's responsibilities for the audit of the financial statements_ section of our report. We are independent of the charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC�s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.
## **Conclusions relating to going concern**
In auditing the financial statements, we have concluded that the trustees use of the going concern basis of accounting in the preparation of the financial statements is appropriate.
Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity�s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.
Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.
## **Other information**
The other information comprises the information included in the annual report other than the financial statements and our auditor's report thereon. The trustees are responsible for the other information contained within the annual report. Our opinion on the financial statements does not cover the other information and we do not express any form of assurance conclusion thereon. Our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the course of the audit, or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.
We have nothing to report in this regard.
## **Matters on which we are required to report by exception**
We have nothing to report in respect of the following matters in relation to which the Charities (Accounts and Reports) Regulations 2008 and the Charities Accounts (Scotland) Regulations 2006 (as amended) require us to report to you if, in our opinion:
- the information given in the financial statements is inconsistent in any material respect with the trustees report; or
- sufficient and proper accounting records have not been kept; or
- the financial statements are not in agreement with the accounting records; or
- we have not received all the information and explanations we require for our audit.
page 7
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **INDEPENDENT AUDITOR'S REPORT (CONTINUED)**
## **TO THE TRUSTEES OF ALEX, THE LEUKODYSTROPHY CHARITY**
## **Responsibilities of trustees**
As explained more fully in the statement of trustees responsibilities, the trustees, who are also the directors of the charity for the purpose of company law, are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error. In preparing the financial statements, the trustees are responsible for assessing the charity�s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charitable company or to cease operations, or have no realistic alternative but to do so.
## **Auditor's responsibilities for the audit of the financial statements**
We have been appointed as auditor under section 144 of the Charities Act 2011 and section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and report in accordance with the Acts and relevant regulations made or having effect thereunder.
Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor's report that includes our opinion. Reasonable assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.
The extent to which our procedures are capable of detecting irregularities, including fraud, is detailed below.
Irregularities, including fraud, are instances of non-compliance with laws and regulations. The objectives of our audit are to obtain sufficient appropriate audit evidence regarding compliance with laws and regulations that have a direct effect on the determination of material amounts and disclosures in the financial statements, to perform audit procedures to help identify instances of non-compliance with other laws and regulations that may have a material effect on the financial statements, and to respond appropriately to identified or suspected non-compliance with laws and regulations identified during the audit.
In relation to fraud, the objectives of our audit are to identify and assess the risk of material misstatement of the financial statements due to fraud, to obtain sufficient appropriate audit evidence regarding the assessed risks of material misstatements due to fraud through designing and implementing appropriate responses and to respond appropriately to fraud or suspected fraud identified during the audit.
However it is the primary responsibility of management, with the oversight of those charged with governance, to ensure that the entity�s operations are conducted in accordance with the provisions of laws and regulations and for the prevention and detection of fraud.
In identifying and assessing the risks of material misstatement in respect of irregularities, including fraud, the audit engagement team made enquiries of management, and those charged with governance, regarding the procedures relating to identifying, evaluating and complying with;
1. laws and regulations and whether they were aware of any instances of non-compliance;
2. detecting and responding to the risks of fraud and whether they have knowledge of any actual, suspected or alleged fraud;
3. the internal controls established to mitigate risks related to fraud or non-compliance with laws and regulations;
As a result of these procedures we consider the most significant laws and regulations that have a direct impact on the financial statements are FRS 102, General Data Protection Regulations, Companies Act, Charities Act 2011, Charities Statement of Recommended Practice, Charities Accounts (Scotland) Regulations 2006 and employment law and regulations. We performed audit procedures to detect non-compliance, which may have a material impact on the financial statements. These included reviewing financial statement disclosures and evaluating advice received from external advisors. There were no significant laws and regulations we deemed as having an indirect impact on the financial statements.
page 8
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **INDEPENDENT AUDITOR'S REPORT (CONTINUED) TO THE TRUSTEES OF ALEX, THE LEUKODYSTROPHY CHARITY**
The audit engagement team identified the risk of management override of controls as the area where the financial statements were most susceptible to material misstatement due to fraud. Audit procedures performed included but were not limited to testing manual journal entries and other adjustments and evaluating the rationale in relation to any significant, unusual transactions and transactions entered into outside of the normal course of business.
Income recognition was also identified as a significant risk, particularly due to increases in grants, shop income and ADSHG income received. All material grants and donations have been assessed and the amount of income recognised in the year has been evaluated. Samples of donations, grants, shop and other income were reviewed and each type of income was also analytically tested. The systems and controls surrounding income recognition was also assessed and documented in the year.
A further description of our responsibilities is available on the Financial Reporting Council�s website at: https://www.frc.org.uk/ auditorsresponsibilities. This description forms part of our auditor's report.
## **Use of our report**
This report is made solely to the charity�s trustees, as a body, in accordance with part 4 of the Charities (Accounts and Reports) Regulations 2008 and regulation 10 of the Charities Accounts (Scotland) Regulations 2006. Our audit work has been undertaken so that we might state to the charity's trustees those matters we are required to state to them in an auditor's report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charity and the charity�s trustees as a body, for our audit work, for this report, or for the opinions we have formed.
**Richard Place Dobson Services Limited Chartered Accountants Statutory Auditor**
Ground Floor 1 - 7 Station Road Crawley West Sussex RH10 1HT
Richard Place Dobson Services Limited is eligible for appointment as auditor of the charity by virtue of its eligibility for appointment as auditor of a company under section 1212 of the Companies Act 2006.
page 9
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**Current financial year**
**Unrestricted**
**Restricted**
**funds**
**2023**
**funds**
**2023**
**Income and endowments from:**
**Notes**
**£**
**£**
Donations and grants
**3**
77,997
169,574
Other trading activities
**4**
697,726
-
Investments
**5**
1,537
-
Other income
**6**
2,152
240
**Total income**
779,412
169,814
**Expenditure on:**
Raising funds
**7**
662,184
-
Charitable activities
**8**
133,892
185,736
**Total expenditure**
796,076
185,736
**Net (expenditure)/income for the year/**
**Net movement in funds**
(16,664)
(15,922)
Fund balances at 1 July 2022
250,769
75,273
**Fund balances at 30 June 2023**
234,105
59,351|**Total**
**2023**
**£**
247,571
697,726
1,537
2,392
949,226
662,184
319,628
981,812
(32,586)
326,042
293,456|**Total**
**2022**
**£**
185,724
702,602
57
3,915|
|---|---|---|
|||892,298|
|||658,658|
|||213,198|
|||871,856|
|||20,442
305,600
326,042|
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 10
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **STATEMENT OF FINANCIAL ACTIVITIES (CONTINUED) INCLUDING INCOME AND EXPENDITURE ACCOUNT**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**Prior financial year**
**Unrestricted**
**Restricted**
**funds**
**2022**
**funds**
**2022**
**Income and endowments from:**
**Notes**
**£**
**£**
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
Gross transfers between funds
3,231
(3,231)
**Net (expenditure)/income 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**
**2022**
**£**
185,724
702,602
57
3,915|
|---|---|
||892,298|
||658,658|
||213,198|
||871,856|
||-|
||20,442
305,600
326,042|
page 11
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **BALANCE SHEET**
## _**AS AT 30 JUNE 2023**_
|**Notes**
**Fixed assets**
Tangible assets
**14**
**Current assets**
Stocks
**15**
Debtors
**16**
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
**20**
Unrestricted funds - general|**2023**
**£**
3,217
45,963
288,452
337,632
(54,051)|**£**
34,819
283,581
318,400
(24,944)
293,456
59,351
234,105
293,456|**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|
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 2023, although an audit has been carried out under section 144 of the Charities Act 2011.
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 under the requirements of the Companies Act 2006, 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 ..[2] ...[1] ...[/] .[0] ...[3] ...[/] .[2] ...[0] ...[2] ...[4]
|**Trustee**
**Company registration number 05142341**
..............................
L Milne|_Iraj Idafar_|
|---|---|
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**Trustee**|
page 12
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **STATEMENT OF CASH FLOWS**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**Notes**
**Cash flows from operating activities**
Cash generated from operations
**24**
**Investing activities**
Purchase of tangible fixed assets
Proceeds from disposal of tangible fixed assets
Investment income received
**Net cash generated from/(used in) investing**
**activities**
**Financing activities**
Repayment of bank loans
**Net cash used in financing activities**
**Net increase/(decrease) in cash and cash equivalents**
Cash and cash equivalents at beginning of year
**Cash and cash equivalents at end of year**|**2023**
**£**
(1,274)
-
1,537
(9,645)|**£**
12,200
263
(9,645)
2,818
285,634
288,452|**2022**
**£**
(40,885)
11,000
57
(5,520)|**£**
18,480
(29,828)
(5,520)
(16,868)
302,502
285,634|
|---|---|---|---|---|
page 13
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **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 have been prepared in accordance with the charity's memorandum and articles of association, the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 (as amended), FRS 102 �The Financial Reporting Standard applicable in the UK and Republic of Ireland� (�FRS 102�) and the Charities SORP "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). The charity is a Public Benefit Entity as defined by FRS 102.
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 14
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **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 15
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **1 Accounting policies**
**----- Start of picture text -----**
||
|---|
|(Continued)|
**----- End of picture text -----**
## **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.
Consumables and branded items are distributed for free. These are not written down to a nil net realisable value if they continue to meet the need for which they were purchased and they are not damaged or obsolete.
## **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**
Rentals payable under operating leases, including any lease incentives received, are charged as an expense on a straight line basis over the term of the relevant lease.
page 16
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **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:
- Depreciation - Management has made assumptions and estimated depreciation rates in respect of showing a true and fair view of the assets at the balance sheet date.
## **3 Donations and grants**
|**Unrestricted**
**Restricted**
**funds**
**funds**
**general**
**2023**
**2023**
**£**
**£**
Donations and gifts
66,347
22,969
Grants received
11,650
146,605
77,997
169,574
**Grants receivable for core**
**activities**
EIG Movement for Good
1,000
-
Michael Watson Charitable
Trust
1,000
-
Minoryx Therapeutics
-
9,992
Department for Education
1,500
-
Making a Locally LMADL
1,500
-
The AMMCO Charitable
Trust
500
-
The Ardwick Trust
500
-
Garfield Weston Foundation
-
-
FB Coales No 4
500
-
The Sylvia Aitcken
Charitable Trust
1,000
-
Arnold Clark Community
Fund
-
-
The Anthony and Elizabeth
Mellows Charitable Trust
2,500
-
London Catalyst Partners
for Health
-
2,000
The Grace Trust
750
-
The National Lottery
Community Funds
-
35,660
The Hospital Saturday Fund
-
2,000
Affinia Therapeutics
-
1,000|**Total**
Unrestricted
Restricted
Total
funds
funds
general
**2023**
2022
2022
2022
**£**
£
£
£
89,316
83,920
10,962
94,882
158,255
14,220
76,622
90,842
247,571
98,140
87,584
185,724
1,000
-
-
-
1,000
-
-
-
9,992
10,000
-
10,000
1,500
-
-
-
1,500
-
-
-
500
-
-
-
500
-
-
-
-
-
15,000
15,000
500
-
-
-
1,000
-
-
-
-
2,000
-
-
-
-
-
-
2,000
-
-
-
750
-
-
-
35,660
-
-
-
2,000
-
-
-
1,000
-
720
720|
|---|---|
page 17
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**3**
**Donations and grants**
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
The Tilehouse Trust
The British Trust for the
Myelin Project
The Gisela Granham
Foundation
Neuraxpharm UK
Jeans 4 Genes
Viking Therapeutics
The Elsie Davis Trust
Forge Biologics
ASPA Therapeutics
BBC Children in Need
Other|-
200
-
-
-
-
-
-
-
-
-
-
-
-
700
-
-
-
-
-
-
-
-
-
-
-
-
11,650|-
-
20,661
-
7,500
-
1,000
5,000
-
-
11,816
-
-
-
-
-
-
1,000
2,500
2,000
5,000
3,000
10,000
5,000
1,488
4,988
15,000
-
146,605|-
200
20,661
-
7,500
-
1,000
5,000
-
-
11,816
-
-
-
700
1,000
2,500
2,000
5,000
3,000
10,000
5,000
1,488
4,988
15,000
-
158,255|-
200
-
-
-
-
-
-
-
-
-
-
-
500
500
500
-
-
-
-
-
-
-
-
-
-
520
14,220|**(Continued)**
3,596
3,596
-
200
9,893
9,893
2,500
2,500
7,500
7,500
2,500
2,500
728
728
3,611
3,611
4,000
4,000
5,000
5,000
11,574
11,574
5,000
5,000
5,000
5,000
-
500
-
500
-
500
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
520
76,622
90,842|**(Continued)**
3,596
3,596
-
200
9,893
9,893
2,500
2,500
7,500
7,500
2,500
2,500
728
728
3,611
3,611
4,000
4,000
5,000
5,000
11,574
11,574
5,000
5,000
5,000
5,000
-
500
-
500
-
500
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
520
76,622
90,842|
|---|---|---|---|---|---|---|
|||||||90,842|
## **4 Other trading activities**
|**Unrestricted**
Unrestricted
Restricted
**funds**
funds
funds
**general**
general
**2023**
2022
2022
**£**
£
£
Fundraising income
28,135
-
-
Shop income
668,506
649,437
699
Shop income - government grants
1,085
52,466
-
Other trading activities
697,726
701,903
699|Total
2022
£
-
650,136
52,466|
|---|---|
||702,602|
page 18
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
- **5 Investments**
||||**Unrestricted**|**Unrestricted**|
|---|---|---|---|---|
||||**funds**|**funds**|
||||**general**|**general**|
||||**2023**|**2022**|
||||**£**|**£**|
|Interest receivable|||1,537|57|
|**Other income**|||||
||**Unrestricted**|**Restricted**|**Total**|**Unrestricted**|
||**funds**|**funds**||**funds**|
||**general**|||**general**|
||**2023**|**2023**|**2023**|**2022**|
||**£**|**£**|**£**|**£**|
|Net gain on disposal of tangible fixed assets|-|-|-|3,915|
|Other income|2,152|240|2,392|-|
||2,152|240|2,392|3,915|
## **6 Other income**
## **7 Raising funds**
|**Unrestricted**
**funds**
**general**
**2023**
**Unrestricted**
**funds**
**general**
**2022**
**Restricted**
**funds**
**2022**
**£**
**£**
**£**
Fundraising and publicity
Other fundraising costs
21,154
10,578
-
Staff costs
48,837
28,980
-
Fundraising and publicity
69,991
39,558
-
Fundraising trading: costs of goods and other costs
Operating charity shops
190,355
241,287
483
Staff costs
392,777
369,187
-
Depreciation and impairment
9,061
8,143
-
Fundraising trading: costs of goods and other costs
592,193
618,617
483
662,184
658,175
483|**Total**
**2022**
**£**
10,578
28,980|
|---|---|
||39,558|
||241,770
369,187
8,143|
||619,100|
||658,658|
page 19
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **8 Charitable activities**
|Staff costs
Rates and water
Insurance
Light and heat
Telephone
Postage and stationery
Advertising
Community Weekend
Consultancy fees
Conference costs
Travel costs
Subscriptions
Computer costs
Legal and professional
Staff training
Repairs & maintenance
Bank Charges
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|**Support**
**Services**
**Awareness**
**and**
**Education**
**Research**
**Community**
**Weekend**
**Total**
**2023**
**2023**
**2023**
**2023**
**2023**
**£**
**£**
**£**
**£**
**£**
46,453
45,172
1,918
8,455
101,998
1,678
1,678
-
-
3,356
136
129
-
-
265
128
128
-
-
256
200
175
-
-
375
567
58
-
-
625
-
-
400
1
401
-
-
-
103,798
103,798
14,487
3,338
10,938
-
28,763
-
2,140
-
-
2,140
470
79
-
-
549
1,109
275
31
-
1,415
9,547
1,711
237
-
11,495
332
1,244
3,732
-
5,308
2,798
222
462
-
3,482
141
141
-
-
282
6
-
1
-
7
78,052
56,490
17,719
112,254
264,515
3,009
-
-
-
3,009
22,807
15,894
2,492
-
41,193
6,041
4,210
660
-
10,911
109,909
76,594
20,871
112,254
319,628
61,148
69,395
3,348
1
133,892
48,761
7,199
17,523
112,253
185,736
109,909
76,594
20,871
112,254
319,628|
|---|---|
page 20
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**8**
**Charitable activities**
**For the year ended 30 June 2022**
Staff costs
Rates and water
Insurance
Light and heat
Telephone
Postage and stationery
Advertising
Consultancy fees
Conference costs
Travel costs
Subscriptions
Computer costs
Legal and professional
Staff training
Repairs & maintenance
Other charitable expenditure
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
**9**
**Grants payable**
Grants to individuals|**(Continued)**
**Support**
**Services**
**Awareness**
**and**
**Education**
**Research**
**Community**
**Weekend**
**Total**
**2022**
**£**
**£**
**£**
**£**
**£**
63,428
22,806
1,401
13,847
101,482
1,792
1,792
-
-
3,584
87
87
-
-
174
128
128
-
-
256
229
183
-
-
412
361
121
-
-
482
-
64
-
-
64
240
600
32,384
18,138
51,362
62
406
252
-
720
-
34
-
-
34
599
250
29
-
878
1,266
1,298
114
154
2,832
10
-
-
-
10
97
97
-
-
194
1,159
1,159
-
-
2,318
69
-
-
574
643
69,527
29,025
34,180
32,713
165,445
2,405
-
-
-
2,405
25,634
10,505
5,883
-
42,022
2,028
832
466
-
3,326
99,594
40,362
40,529
32,713
213,198
43,332
30,502
6,598
-
80,432
56,262
9,860
33,931
32,713
132,766
99,594
40,362
40,529
32,713
213,198
**Support**
**Services**
**Support**
**Services**
**2023**
**2022**
**£**
**£**
3,009
2,405
3,009
2,405|**(Continued)**
**Support**
**Services**
**Awareness**
**and**
**Education**
**Research**
**Community**
**Weekend**
**Total**
**2022**
**£**
**£**
**£**
**£**
**£**
63,428
22,806
1,401
13,847
101,482
1,792
1,792
-
-
3,584
87
87
-
-
174
128
128
-
-
256
229
183
-
-
412
361
121
-
-
482
-
64
-
-
64
240
600
32,384
18,138
51,362
62
406
252
-
720
-
34
-
-
34
599
250
29
-
878
1,266
1,298
114
154
2,832
10
-
-
-
10
97
97
-
-
194
1,159
1,159
-
-
2,318
69
-
-
574
643
69,527
29,025
34,180
32,713
165,445
2,405
-
-
-
2,405
25,634
10,505
5,883
-
42,022
2,028
832
466
-
3,326
99,594
40,362
40,529
32,713
213,198
43,332
30,502
6,598
-
80,432
56,262
9,860
33,931
32,713
132,766
99,594
40,362
40,529
32,713
213,198
**Support**
**Services**
**Support**
**Services**
**2023**
**2022**
**£**
**£**
3,009
2,405
3,009
2,405|
|---|---|---|
|||165,445
2,405
42,022
3,326|
|||213,198|
|||80,432
132,766|
|||213,198|
|||**Support**
**Services**
**2022**
**£**
2,405|
|||2,405|
page 21
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**10**
**Support costs**
**Support costs**
**Governance**
**costs**
**£**
**£**
Staff costs
26,410
-
Depreciation
785
-
Insurance
713
-
Telephone
354
-
Postage and stationery
337
-
IT Costs
3,646
-
Training and recruitment
costs
823
-
Premises expenses
3,840
-
Repairs, maintenance and
equipment
70
-
Subscriptions
260
-
Travel and subsistence
1,207
-
Sundry costs
333
-
Bank Charges
242
-
Bank Loan interest paid
1,003
-
Consultancy fee
1,170
-
Legal and professional
-
111
Accountancy fees
-
10,800
41,193
10,911
Analysed between
Charitable activities
41,193
10,911|**2023 Support costs**
**Governance**
**costs**
**£**
**£**
**£**
26,410
23,199
-
785
508
-
713
981
-
354
196
-
337
742
-
3,646
3,257
-
823
4,370
-
3,840
4,118
-
70
2,041
-
260
411
-
1,207
339
-
333
-
-
242
43
-
1,003
1,211
-
1,170
606
-
111
-
26
10,800
-
3,300
52,104
42,022
3,326
52,104
42,022
3,326|**2022**
**£**
23,199
508
981
196
742
3,257
4,370
4,118
2,041
411
339
-
43
1,211
606
26
3,300|
|---|---|---|
|||45,348|
|||45,348|
Governance costs include amounts payable to the auditor of £10,800 (2022: £3,300 to the independent examiner) in respect of their audit.
## **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:
|**2023**|**2022**|
|---|---|
|**Number**|**Number**|
|26|25|
page 22
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**12**
**Employees**
**Employment costs**
Wages and salaries
Social security costs
Other pension costs|**(Continued)**
**2023**
**2022**
**£**
**£**
520,869
482,801
38,158
30,934
10,995
9,113
570,022
522,848|
|---|---|
## **Key Management Personnel**
The trustees consider four (2022: four) staff members to be Key Management Personnel, the total benefit paid to them is £134,904 (2022: £126,335).
There were no employees whose annual remuneration was more than £60,000.
## **13 Taxation**
The charity is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or section 252 of the Taxationof Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects.
**14 Tangible fixed assets**
|**Plant and Fixtures, fittings**
**Moto**
**Cost**
**machinery**
**£**
**& equipment**
**£**
At 1 July 2022
31,384
13,200
Additions
1,274
-
Disposals
(245)
-
At 30 June 2023
32,413
13,200
**Depreciation and impairment**
At 1 July 2022
26,066
6,600
Depreciation charged in the year
2,231
1,320
Eliminated in respect of disposals
(245)
-
At 30 June 2023
28,052
7,920
**Carrying amount**
At 30 June 2023
4,361
5,280
At 30 June 2022
5,326
6,600|**r vehicles**
**£**
36,964
-
-
36,964
5,492
6,294
-
11,786
25,178
31,472|**Total**
**£**
81,548
1,274
(245)
82,577
38,158
9,845
(245)
47,758
34,819
43,398|
|---|---|---|
page 23
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**15**
**Stocks**
Consumables and branded goods
**16**
**Debtors**
**Amounts falling due within one year:**
Trade debtors
Other debtors
Prepayments and accrued income
**17**
**Loans and overdrafts**
Bank loans
Payable within one year
Payable after one year
**18**
**Creditors: amounts falling due within one year**
**Notes**
Bank loans
**17**
Trade creditors
Other creditors
Accruals and deferred income
**19**
**Creditors: amounts falling due after more than one year**
**Notes**
Bank loans
**17**|**2023**
**£**
3,217
**2023**
**£**
2,738
20,209
23,016
45,963
**2023**
**£**
34,835
9,891
24,944
**2023**
**£**
9,891
10,733
12,429
20,998
54,051
**2023**
**£**
24,944|**2022**
**£**
3,877|
|---|---|---|
|||**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|
page 24
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **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:
|
**1**
Research
ScHARR Economic Survey
Education & Awareness
Family Weekend
Support Services
Technology
Core Costs
New Born Screening
Children's Support Tools
Covid Support Grant
Alexander's Disease|**Balance at**
**July 2021**
**£**
-
35,712
10,649
1,120
37,526
3,014
472
33,777
-
-
1,200
123,470|**Movement in funds**
**Incoming**
**Resource**
**resources**
**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**
**30**
**£**
-
(35,712)
(7,291)
-
-
(2,532)
-
35,712
7,291
(699)
-
(3,231)|**Balance at**
**June 2022**
**£**
-
-
2,511
-
21,049
-
-
37,026
13,487
-
1,200|
|---|---|---|---|---|
|||||75,273|
|
**1**
Research
Education & Awareness
Family Weekend
Support Services
New Born Screening
Children's Support Tools
Alexander's Disease|**Balance at**
**July 2022**
**£**
-
2,511
-
21,049
37,026
13,487
1,200
75,273|**Movement in funds**
**Incoming**
**Resource**
**Transfer**
**resources**
**expended**
**30**
**£**
**£**
**£**
20,594
(12,576)
-
8,049
(7,199)
-
112,253
(112,253)
-
28,678
(35,127)
-
-
(4,948)
-
240
(13,633)
-
-
-
-
169,814
(185,736)
-|**Balance at**
**June 2023**
**£**
8,018
3,361
-
14,600
32,078
94
1,200|
|---|---|---|---|
||||59,351|
Research fund � A pool of funds to enable Alex TLC to contribute to and promote relevant and approved research activities.
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.
page 25
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
## **20 Restricted funds**
**(Continued)**
Community Weekend fund � organisation of a patient, carer and professional 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.
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.
## **21 Analysis of net assets between funds**
|**Unrestricted**
**funds**
**Restricted**
**funds**
**2023**
**2023**
**£**
**£**
Fund balances at 30
June 2023 are
represented by:
Tangible assets
34,819
-
Current assets/(liabilities)
224,230
59,351
Long term liabilities
(24,944)
-
234,105
59,351|**Total Unrestricted**
**funds**
**Restricted**
**funds**
**2023**
**2022**
**2022**
**£**
**£**
**£**
34,819
43,398
-
283,581
242,204
75,273
(24,944)
(34,833)
-
293,456
250,769
75,273|**Total**
**2022**
**£**
43,398
317,477
(34,833)|
|---|---|---|
|||326,042|
## **22 Operating lease commitments**
At the reporting end date the charity had outstanding commitments for future minimum lease payments under noncancellable operating leases, which fall due as follows:
|Within one year
Between two and five years
In over five years|**2023**
**£**
96,130
163,884
-
260,014|**2022**
**£**
115,630
326,790
97,455
539,875|
|---|---|---|
page 26
## **ALEX, THE LEUKODYSTROPHY CHARITY**
## **NOTES TO THE FINANCIAL STATEMENTS (CONTINUED)**
## _**FOR THE YEAR ENDED 30 JUNE 2023**_
|**23**
**Related party transactions**
There were no disclosable related party transactions during the year (2022 - Nil).
**24**
**Cash generated from operations**
**2023**
**£**
(Deficit)/surpus for the year
(32,586)
Adjustments for:
Investment income recognised in statement of financial activities
(1,537)
Gain on disposal of tangible fixed assets
-
Depreciation and impairment of tangible fixed assets
9,846
Movements in working capital:
Decrease/(increase) in stocks
660
Decrease/(increase) in debtors
20,048
Increase in creditors
15,769
**Cash generated from operations**
12,200
**25**
**Analysis of changes in net funds**
**At 1 July 2022**
**Cash flows**
**At 30**
**£**
**£**
Cash at bank and in hand
285,634
2,818
Loans falling due within one year
(9,647)
(244)
Loans falling due after more than one year
(34,833)
9,889
241,154
12,463|**2022**
**£**
20,442
(57)
(3,915)
8,651
(3,206)
(5,966)
2,531
18,480
**June 2023**
**£**
288,452
(9,891)
(24,944)
253,617|
|---|---|
page 27