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||||||| |---|---|---|---|---|---| |Trustees' Annual Report for the period| |Period start date|Period end date| |01|06|2023|31|05|2024| |From|To| **----- End of picture text -----**
## Section A Reference and administration details **Charity name** Leber’s Hereditary Optic Neuropathy Society **Other names charity is known by** LHON Society > **Registered charity number (if any)** ~~H~~ 1157206 **Charity's principal address** The Hayloft, Pury Hill Business Park, Alderton Northamptonshire **Postcode NN12 7LS** ## **Names of the charity trustees who manage the charity** **----- Start of picture text -----**
|||||| |---|---|---|---|---| |Dates acted if not for whole|Name of person (or body) entitled| |Trustee name|Office (if any)| |year|to|appoint|trustee|(if any)| |Diane Louise|03 April 2024| |1| |Watson| |2|Russell Wheeler| |3|James Ferguson| |4|Charlotte McMillan| |5|Andrew Mumford| |6| |7| |8| |9| |10| |11| |12| |13| |14| |15| |16| |17| |18| |19| |20| |ee| |Names of the trustees for the charity, if any, (for example, any custodian trustees)| **----- End of picture text -----**
**Name Dates acted if not for whole year** March **2012** **TAR** 1 ## **Names and addresses of advisers (Optional information)** |**Type of adviser**|**Name**
**Address**|**Name**
**Address**| |---|---|---| |||| |||| |||| |||| |**Name of chief executive or names of senior staff members (Optional information)**||| |||| ## **Section B Structure, governance and management** ## **Description of the charity’s trusts** Constitution, dated 16 Jan 2017 Type of governing document (eg. trust deed, constitution) Charitable Incorporated Organisation – registered 28 May 2014 How the charity is constituted (eg. trust, association, company) By existing trustees. Minimum of three, maximum of twelve trustees Trustee selection methods Type of governing document (eg. appointed by, elected by) ## **Additional governance issues (Optional information)** You **may choose** to include additional information, where relevant, about: - policies and procedures adopted for the induction and training of trustees; - the charity’s organisational structure and any wider network with which the charity works; - relationship with any related parties; - trustees’ consideration of major risks and the system and procedures to manage them. ## **Section C Objectives and activities** **Summary of the objects of the charity set out in its governing document** ## Our aims: To provide support and information to those impacted by LHON; patients, their family, friends and healthcare providers. Provide guidance and representation on issues that affect the LHON community. Promote up-to-date knowledge and understanding of LHON in the welfare, medical and scientific communities. March **2012** **TAR** 2 Facilitate research into understanding and seeking ways of preventing and ultimately reversing sight loss in LHON affected patients. **Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)** **Additional details of objectives and activities (Optional information)** March **2012** **TAR** 3 You **may choose** to include further statements, where relevant, about: - policy on grantmaking; - policy programme related investment; - contribution made by volunteers. Section D Achievements and performance March **2012** **TAR** 4 ## Section D Achievements and performance June 2023 to May 2024 **Summary of the main achievements of the charity** Between June 2023 and May 2024, the LHON Society achieved several **during the year** milestones to support individuals affected by Leber Hereditary Optic Neuropathy (LHON): **Community Engagement and Events** : Regional Gatherings: The Society organised regional events to foster community connections: Cambridge: June 24, 2023, at Chill2 Cafe Manchester: July 1, 2023, at Cosy Club restaurant Cardiff: November 11, 2023, at Cardiff University A grant from the National Lottery Community Fund supported these events. Patient and Family Day July 2024: A significant event was held on July 13, 2024, at the Hyatt Regency Hotel in Manchester. Although the date itself is outside this report's scope, planning for this patient day was well underway in 2024. The day featured presentations on the latest research and treatments, personal stories from those living with LHON ## **Section E Financial review** March **2012** **TAR** 5 Considering its relatively low levels of income and **Brief statement of the** expenditure (see below), the trustees do not require any **charity’s policy on reserves** reserves to be held by the charity **Details of any funds materially in deficit** None ## **Further financial review details (Optional information)** You **may choose** to include additional information, where relevant about: - the charity’s principal sources of funds (including any fundraising); - how expenditure has supported the key objectives of the charity; Financial Report as of 1/6/2024 Opening balance brought forward: £30,584 - Income during the year: £11,062 Expenditure: £2,916 Closing balance: £38,730 - investment policy and objectives including any ethical investment policy adopted. ## **Section F Other optional information** ## **Section G Declaration** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** **Signature(s) Full name(s)** James Ferguson **Position (eg Secretary, Chair,** Chair of trustees **etc) Date** 20th March 2025 March **2012** **TAR** 6 |SEMAN|SEMAN|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~|**Charity Name**
**No (if any)**
**CC16a**
**Leber's Hereditary Optic Neuropathy Society**
**1157206**
**Receipts andpayments accounts**
Period start date
**To**
Period end date
6/1/2023
5/31/2024
**For the period**
**from**
~~———_~~| |---|---|---|---|---|---|---|---|---|---|---|---|---|---|---| |**Section A Receipts and payments**||||||||||||||| |||||**Unrestricted**
**funds**|||**Restricted**
**funds**||**Endowment**
**funds**|||**Total funds**||**Last year**| |||||**to the nearest £**|**to the nearest £**||**to the nearest £**||**to the nearest £**|||**to the nearest £**||**to the nearest £**| |**A1 Receipts**||||||||||||||| |Donations and interest||||**11,062**|||||**-**|||**11,062**||**4,247**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| |**Sub total**(Gross income for AR)||||**11,062**|||**-**||**-**|||**11,062**||**4,247**| |**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Sub total -**
**-**
**-**
**-**
**-**
**Total receipts 11,062**
**-**
**-**
**11,062**
**4,247**
**A2 Asset and investment sales,**
**(see table).**
~~——~~||||||||||||||| |**A3 Payments**||||||||||||||| |Bank fees||||**74**|||**-**||**-**|||**74**||**61**| |Conference attendance||||**617**|||**-**||**-**|||**617**||**756**| |Insurance||||**115**|||**-**||**-**|||**115**||**-**| |Mailchimp||||**177**|||**-**||**-**|||**177**||**-**| |Outreachprogramme||||**1,156**|||**-**||**-**|||**1,156**||**195**| |Patient day||||**29**|||**-**||**-**|||**29**||**11,777**| |Website expenses||||**749**|||**-**||**-**|||**749**||**1,038**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| |||||**-**|||**-**||**-**|||**-**||**-**| **Sub total 2,916 - - 2,916 13,827 A4 Asset and investment purchases, (see table) - - - - - - - - Sub total - - - - - Total payments** ~~===~~ **2,916 - - 2,916 13,827 Net of receipts/(payments) 8,146 - - 8,146 - 9,580 A5 Transfers between funds - - - - - A6 Cash funds last year end 30,584 - - 30,584 30,584 Cash funds this year end** ~~==]~~ **38,730 - - 38,730 21,004** ~~=~~ ## **Section B Statement of assets and liabilities at the end of the period** |**Categories**
**B1 Cash funds**
**B2 Other monetary assets**
**B3 Investment assets**
**B5 Liabilities**
**B4 Assets retained for the**
**charity’s own use**
Signed by one or two trustees on
behalf of all the trustees|**Details**
**Details**
**Details**
**Details**
**Details**
Signature
**Total cash funds**
(agree balances with receipts and payments
account(s))|**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**38,730**
OK
OK
**to nearest £**
**to nearest £**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**Cost (optional)**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
**-**
Print Name
James Ferguson
**Unrestricted**
**funds**
**Restricted**
**funds**
**Unrestricted**
**funds**
**Restricted**
**funds**
**Fund to which**
**asset belongs**
**Fund to which**
**asset belongs**
**Fund to which**
**liability relates**
**Amount due**
**(optional)**|**to nearest £**
**Endowment**
**funds**| |---|---|---|---| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||OK| ||||**to nearest £**
**Endowment**
**funds**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||**When due (optional)**| ||||| ||||| ||||| ||||| ||||| ||||| ||||Date of approval| |||James Ferguson|20th March 2025| |||||