Trustees’ Annual Report for the period
From 03.04.24 To 02.04.2025
Charity name: HME-The New Generation
Charity registration number: 1186351
Objectives and Activities
| Objectives and Activities | ||
|---|---|---|
| SORP reference |
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| Summary of the purposes of the charity as set out in its governing document |
Para 1.17 | The object of the CIO is to preserve and protect good health for the public benefit among persons suffering from Hereditary Multiple Exostoses (HME) their families and other carers, and to relieve needs arising from the condition, in particular but not exclusively by: a) providing support forums, information, practical advice and emotional support for sufferers of HME, their families and other carers. b) raising public awareness of HME through the provision of information designed to inform and educate the general public and the medical profession about the condition. |
| Summary of the main activities in relation to those purposes for the public benefit, in particular, the activities, projects or services identified in the accounts. |
Para 1.17 and 1.19 |
‘Those affected by HME’ includes sufferers and anyone with a connection to that person. Facebook closed support group offering emotional support, information and a platform where those affected by the rare condition, HME, can communicate with each other and offer mutual support. Quarterly Zoom meetings for members offering support and interaction. This offers a different platform for sufferers to chat with others and share experiences, offering mutual support, and relieves feelings of isolation. In the reported year a Zoom call was held for members to launch an HME Podcast as a form of information for sufferers but also as a way of raising public awareness of the condition. This project is ongoing. |
| Sale of badges to raise awareness. Occasional sales are made. Information sheets. For example, it is sometimes helpful for a parent to hand a teacher a booklet with more information about their child’s condition and how this affects their day. Equally an information sheet on HME is often helpful for an employer to understand any reasonable adjustments. The charity aims to organise an annual face-to-face meeting for its members. This may be a conference style with guest speakers who either specialise in the condition or offer motivational support. This meeting is also open to members of the public and health professionals who want to learn more about HME. Alternatively it may be in the format of a social gathering over a weekend, with hotel accommodation, leisure centre activities and bowling. The charity has a website which provides information about the condition and signposts to the Facebook Group. A regular newsletter is produced as a further method of communicating with members and this is also made available to those outside of the charity. |
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|---|---|---|
| Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit |
Para 1.18 | We have planned activities to meet the charity’s Objects and in doing so have been mindful of the Charity Commission’s guidance on public benefit. |
Additional information (optional)
You may choose to include further statements where relevant about:
SORP reference |
||
|---|---|---|
| Policy on grant making | Para 1.38 | |
| Policy on social investment including program related investment |
Para 1.38 |
| Contribution made by volunteers |
Para 1.38 | The Trustees are all volunteers and are grateful to others who volunteer their time to aid with the work of supporting those affected by HME. |
|---|---|---|
| Other |
Achievements and Performance
| SORP reference |
||
|---|---|---|
| Summary of the main achievements of the charity, identifying the difference the charity’s work has made to the circumstances of its beneficiaries and any wider benefits to society as a whole. |
Para 1.20 | In the reported year, we held a social event at Wokingham Leisure Centre over a weekend in September 2024. The main activities took place on the Saturday, featuring a range of equipment in the sports hall for everyone to enjoy — including a bouncy castle and badminton. A section of the swimming pool was reserved exclusively for our members, allowing them to relax and feel comfortable among others who understand their experiences and, in some cases, share the same condition. The day concluded with a fun evening of bowling. This event provided a wonderful opportunity for members with HME, along with their families and carers, to connect and engage with one another. It also gave children the chance to interact and build friendships through play. Before the event, we hosted a Zoom meeting to help attendees meet each other in advance and share important information about the weekend. All members are welcome at our events, which are typically attended by most of the trustees. Our Facebook platform also continues to be a valuable space where members can ask questions, connect with others, and stay informed about upcoming activities. |
Additional information (optional) You may choose to include further statements where relevant about:
Achievements against objectives set Para 1.41
| Performance of fundraising activities against objectives set |
Para 1.41 | |
| Investment performance against objectives |
Para 1.41 | |
| Other |
Financial Review
| Review of the charity’s financial position at the end of the period |
Para 1.21 | The charity is in a good financial position at the end of the period. We held a social event for members in September 2024 which was very successful. We have continued to hold zoom meetings in between face to face events and are active on Facebook for our members. Looking ahead to next year, we aim to hold another social event for members after the success of the previous one. Fundraising and donations have continued both online and through fundraising events increasing the amount of funds available to use for future events. |
|---|---|---|
| Statement explaining the policy for holding reserves stating why they are held |
Para 1.22 | Reserves will be held to cover the costs of outgoings such as insurances, zoom membership and any other costs that will be beneficial to the charity in supporting members. |
| Amount of reserves held | Para 1.22 | £550.00 |
| Reasons for holding zero reserves |
Para 1.22 | N/A |
| Details of fund materially in deficit |
Para 1.24 | N/A |
| Explanation of any uncertainties about the charity continuing as a going concern |
Para 1.23 | N/A |
Additional information (optional) You may choose to include further statements where relevant about:
The charity’s principal sources of funds (including any fundraising) |
Para 1.47 |
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|---|---|---|
| Investment policy and objectives including any social investment policy adopted |
Para 1.46 | |
| A description of the principal risks facing the charity |
Para 1.46 | |
| Other |
Structure, Governance and Management
| Description of charity’s trusts: |
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|---|---|---|
| Type of governing document (trust deed, royal charter) |
Para 1.25 | Constitution dated 11 November 2019 |
| How is the charity constituted? (e.g unincorporated association, CIO) |
Para 1.25 | Charitable Incorporated Organisation |
| Trustee selection methods including details of any constitutional provisions e.g. election to post or name of any person or body entitled to appoint one or more trustees |
Para 1.25 | Trustees are appointed or reappointed annually at a Trustees (Members) Meeting held in November. A recruitment policy and process is in place for appointments to be made throughout the year if necessary. |
Additional information (optional) You may choose to include further statements where relevant about:
Policies and procedures adopted for the induction and training of trustees |
Para 1.51 |
|
|---|---|---|
| The charity’s organisational structure and any wider network with which the charity works |
Para 1.51 | |
| Relationship with any related parties |
Para 1.51 | |
| Other | All Trustees have enhanced DBS checks. |
Reference and Administrative details
| Charity name | HME–The New Generation |
|---|---|
| Other name the charity uses | n/a |
| Registered charity number | 1186351 |
| Charity’s principal address | 9 Conway Drive, Bourne, PE10 2BL |
Names of the charity trustees who manage the charity
| 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 |
Trustee name | Office (if any) | Dates acted if not for whole year |
Name of person (or body) entitled to appoint trustee (ifany) |
|---|---|---|---|---|
| Helen Small | Chair | 3.4.24-30.11.24 | ||
| Lynda Tams | Secretary | |||
| Samantha Searle | Treasurer | |||
| Leigh Edwards | ||||
| Kate McEvoy | Chair | 30.11.24-2.4.25 | ||
| Dawn Searle | ||||
| Rob Searle | Chair | 30.11.24-2.4.25 | ||
| Hannah Whitelock | ||||
| Minna Korjonen | ||||
– Corporate trustees names of the directors at the date the report was approved
Director name n/a
Name of trustees holding title to property belonging to the charity
| Trustee name | Dates acted if not for whole year |
|
|---|---|---|
| n/a | ||
Funds held as custodian trustees on behalf of others
Description of the assets held n/a in this capacity
Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects
Details of arrangements for safe custody and segregation of such assets from the charity’s own assets
Additional information (optional)
Names and addresses of advisers (Optional information)
| Type of adviser |
Name Address |
Name Address |
|---|---|---|
| n/a | ||
Name of chief executive or names of senior staff members (Optional information)
n/a
Exemptions from disclosure
Reason for non-disclosure of key personnel details
Other optional information
Declarations
The trustees declare that they have approved the trustees’ report above. Signed on behalf of the charity’s trustees
Signature(s) Full name(s) Kate McEvoy Position (eg Secretary, Chair Chair, etc) Date 12.11.2025
| HME-The New Generation |
HME-The New Generation |
HME-The New Generation |
HME-The New Generation |
CC16a | |
|---|---|---|---|---|---|
| For the period from |
4/3/2024 | To | |||
| Section A Receipts and payments | |||||
| A1 Receipts Fundraising 25 Donations 550 Conference/Social event income 548 - - - - - 1,123 - - Sub total - Total receipts 1,123 A3 Payments Insurances 179 Zoom subscription 156 FundraisingRegulator - Conference/Social event expenses 2,149 Badgepostage - Badges 211 Trustee expenses 444 - Sub total 3,140 - - Sub total - Total payments 3,140 Net of receipts/(payments) - 2,016 A5 Transfers between funds - A6 Cash funds last year end 59,664 Cash funds this year end 57,648 Unrestricted funds to the nearest £ Transfer from HMESG charity number 1091069 Sub total(Gross income for AR) A2 Asset and investment sales, (see table). A4 Asset and investment purchases,(see table) |
to the nearest £ Restricted funds |
to the nearest £ Endowment funds |
Total funds to the nearest £ |
Last year to the nearest £ |
|
| - - - - - - - - - |
- - - - - - - - - |
25 550 548 - - - - - 1,123 |
1,585 | ||
| 450 | |||||
| 1,045 | |||||
| 53,742 | |||||
| - | |||||
| - | |||||
| - | |||||
| - | |||||
| 56,822 | |||||
| - - - |
- - - |
- - - |
|||
| - | |||||
| - | |||||
| - | - | 1,123 | 56,822 | ||
| - - - - - - - - - |
- - - - - - - - - - |
179 156 - 2,149 - 211 444 - - 3,140 |
166 | ||
| 144 | |||||
| 50 | |||||
| 4,077 | |||||
| 4 | |||||
| - | |||||
| - | |||||
| - | |||||
| 4,441 | |||||
| - - - |
- - - |
- - - |
|||
| - | |||||
| - | - | 3,140 | 4,441 | ||
| - - - - |
- - - - |
- 2,016 - 59,664 57,648 |
52,382 | ||
| - | |||||
| - | |||||
| 52,382 |
Section B Statement of assets and liabilities at the end of the period
| Categories Details B1 Cash funds Bank Details B2 Other monetary assets Details B3 Investment assets Details Details B5 Liabilities Signature Total cash funds (agree balances with receipts and payments account(s)) Badges for sale (number remaining 29) at cost price (2) Badges for sale (number remaining 100) at costprice(3) B4 Assets retained for the charity’s own use Signed by one or two trustees on behalf of all the trustees |
to nearest £ to nearest £ 57,648 - - - - - 57,648 - OK OK to nearest £ to nearest £ 14 - 211 - - - - - - - - - Cost (optional) - - - - - Cost (optional) - - - - - - - - - - - - - - Print Name SAMANTHA SEARLE 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) |
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| Date of approval |
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| SAMANTHA SEARLE | 12.11.2025 | |
(1) Funds transferred from HME Support Group charity as group was inactive and has (2) Badges with logo on - bought in June 2019 and sold to raise funds for charity. Pric -3 Badges with logo on - bought in August 2024 and sold to raise funds for charity. P
s now closed down, transferring remaining funds for research purposes to HME- The New Generation ce shown is the cost price as this is current value. rice shown is the cost price as this is current value.