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|Trustees' Annual Report for the period|
|Period start date|Period end date|
|01|06|2023|31|05|2024|
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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
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|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|
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|Names of the trustees for the charity, if any, (for example, any custodian trustees)|
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Name Dates acted if not for whole year
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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:
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policies and procedures adopted for the induction and training of trustees;
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the charity’s organisational structure and any wider network with which the charity works;
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relationship with any related parties;
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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.
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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)
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You may choose to include further statements, where relevant, about:
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policy on grantmaking;
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policy programme related investment;
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contribution made by volunteers.
Section D Achievements and performance
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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
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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:
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the charity’s principal sources of funds (including any fundraising);
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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
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| 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 ~~———_~~ |
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| 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 | ||||||||||
| - | - | - | - | - | ||||||||||
| - | - | - | - | - | ||||||||||
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| - | - | - | - | - | ||||||||||
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| 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). ~~——~~ |
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| 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 |
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| Date of approval | |||
| James Ferguson | 20th March 2025 | ||