Trustees’ Annual Report for the period
From Jan 2024 Period start date To December 2024 Period end date
Charity name: OSTEOGENESIS IMPERFECTA FOUNDATION NETWORK
Charity registration number: 1190022
Objectives and Activities
| SORP reference | ||
|---|---|---|
| Summary of the purposes of the charity as set out in its governing document |
Para 1.17 | The relief of poverty for the public benefit in any part of the world through the provision of advice, support, grants, equipment, treatment, and care to those that suffer from osteogenesis Imperfecta. |
| 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 |
Educating the public and medical professionals on the conditions through seminars, conferences, and raising awareness on brittle bone conditions. |
| Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit |
Para 1.18 | Yes, the trustees confirm this. |
Additional information (optional)
You may choose to include further statements where relevant about:
SORP reference Para 1.38 Policy on grant making N/A Para 1.38 Policy on social investment including program related investment Para 1.38 Contribution made by volunteers
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 | Our project spanned nine months, during which the outcomes and progress achieved have consistently met and exceeded our expectations. At the project's inception, we conducted a series of seminars (located in Hertfordshire) and webinars, each lasting approximately two hours, focusing on holistic wellness for individuals living with Osteogenesis Imperfecta (OI). Our webinar series included a session on managing pain, ofering practical advice and support for those dealing with chronic discomfort. Another webinar focused on corrective surgery for OI, providing participants with crucial information and hope for improved quality of life. Our webinars attracted a substantial audience, with 70 participants in attendance. This impressive turnout was achieved by live- streaming the sessions on Facebook, thereby reaching an international audience. Given the high attendance from our global audience, our webinars featured approximately six distinguished speakers. The charity has held several educational events on Zoom, educating attendees about brittle bone conditions, signs to watch for, and where to get help if needed (signposting). Most women globally have benefited from these meetings. Furthermore, we hosted an event titled "Partners Get Together," to foster partnerships and raise funds. This event served a dual purpose: to increase awareness of our organisation and to solicit potential partnersforsupportandfundraising. |
| Each partner was encouraged to |
|---|
| invite a friend who could also become |
| a partner. The event was a |
| resounding success, resulting in two |
| new partners who committed to |
| supporting us with their expertise and |
| sponsoring our events in Africa. One |
| of our notable initiatives includes a |
| wheelchair distribution in Nigeria, |
| where we plan to deliver 300 |
| wheelchairs. We actively support and |
| collaborate with other OI |
| organisations across Africa and |
| Europe, |
| Another event we heldwas a Salsa |
| night for the OI carers to support |
| their wellbeing. This was very |
| successful. Again, one person |
| came onboard and donated £200 |
| on the night. We also hosted a |
| Christmas party to raise |
| awareness and secure fnancial |
| and material resources for |
| Osteogenesis Imperfecta (OI) |
| organisations in Africa. The event |
| proved highly successful, resulting |
| in the collection of used clothing |
| and reading glasses to be sent to |
| Africa. Generous attendees |
| donated a signifcant amount of |
| clothing, which we utilised to |
| empower OI families, particularly |
| those where women have been |
| abandoned by their husbands due |
| to their disability and are left to |
| raise their children alone. These |
| clothes were incorporated into an |
| empowerment program designed |
| to help women start their own |
| businesses. Last year, this |
| initiative successfully empowered |
| fve women. |
| At the Harpenden Carnival we had |
| a stand which allowed us to |
| actively engage with the |
| community, raising awareness |
| about brittle bone disease. We |
| interacted with individuals afected |
| by the condition and provided |
| guidance on accessing additional |
| support services. Moreover, we |
| madevaluable connectionswith |
volunteers from L&D Hospital, who were previously unfamiliar with the condition. This has led to an invitation for continued dialogue to enhance awareness and foster greater engagement among hospital staff.
Additional information (optional)
You may choose to include further statements where relevant about:
Achievements against objectives set |
Para 1.41 |
All met |
|---|---|---|
| Performance of fundraising activities against objectives set |
Para 1.41 | Met |
| Investment performance against objectives |
Para 1.41 | |
| Other |
Financial Review
| Financial Review | ||
|---|---|---|
| Review of the charity’s financial position at the end of the period |
Para 1.21 | Done through awareness to secure partnership and donations |
| Statement explaining the policy for holding reserves stating why they are held |
Para 1.22 | The policy is to hold 3 months' worth of expenditure as reserves |
| Amount of reserves held | Para 1.22 | £1200 |
| Reasons for holding zero reserves |
Para 1.22 | |
| 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 |
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 |
Facebook fundraising and individual donation |
|---|---|---|
| Investment policy and objectives including any social investment policy adopted |
Para 1.46 | N/A |
| A description of the principal risks facing the charity |
Para 1.46 | N/A |
| Other |
Structure, Governance and Management
| Description of charity’s trusts: |
||
|---|---|---|
| Type of governing document (trust deed, royal charter) |
Para 1.25 | Constitution |
| How is the charity constituted? (e.g unincorporated association, CIO) |
Para 1.25 | CIO |
| 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 | Appointed by trustees |
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 | Safeguarding, First aid Equality |
|---|---|---|
| The charity’s organisational structure and any wider network with which the charity works. |
Para 1.51 | Other OI organisations within Europe and Africa |
| Relationship with any related parties |
Para 1.51 | |
| Other |
Reference and Administrative details
| Charity name | Osteogenesis Imperfecta Foundation Network |
|---|---|
| Other name the charity uses | OIFN |
| Registered charity number | 1190022 |
| Charity’s principal address | The River House 42 Coldharbour Lane Harpenden, Hertfordshire, AL5 4UN |
Names of the charity trustees who manage the charity
| 1 2 3 4 5 6 7 |
Trustee name | Office (if any) | Dates acted if not for whole year |
Name of person (or body) entitled to appoint trustee (ifany) |
|---|---|---|---|---|
| Tarela Aghanti | Chair | For the wholeyear | ||
| Mabel Okafor | Treasurer | For the wholeyear | ||
| Caroline Harrigan | Sec | For the wholeyear | ||
| Maureen Whitehead |
Trustee | For the whole year | ||
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– 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 in this capacity |
N/A |
|---|---|
| Name and objects of the charity on whose behalf the assets are held and how this falls within the custodian charity’s objects |
N/A |
| Details of arrangements for safe custody and segregation of such assets from the charity’s own assets |
N/A |
Additional information (optional)
Names and addresses of advisers (Optional information)
Type of Name Address adviser
Name of chief executive or names of senior staff members (Optional information)
Exemptions from disclosure
Reason for non-disclosure of key personnel details
N/A
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) Tarela Aghanti Full name(s) Tarela Aghanti
Position (eg Secretary, Chair Chair, etc)
Date 10/01/2025
STATEMENT OF INCOME AND EXPENDITURE ACCOUNT FOR THE Y
OSTEOGENESIS IMPERFECTA FOUNDATION NETWORK.
| STATEMENT OF INCOME AND EXPENDITURE ACCOUNT FOR THE Y | STATEMENT OF INCOME AND EXPENDITURE ACCOUNT FOR THE Y | STATEMENT OF INCOME AND EXPENDITURE ACCOUNT FOR THE Y | STATEMENT OF INCOME AND EXPENDITURE ACCOUNT FOR THE Y |
|---|---|---|---|
| OSTEOGENESIS IMPERFECTA FOUNDATION NETWORK. | |||
| DATE | ACTIVITY | INCOME | EXPENDITURE |
| £ - | £ - | ||
| 1-Jan-24 | B/L | ||
| 3-Jan-24 | VARSHAMANOHITHARA | 200.00 | |
| 10-Jan-24 | ZOOM US | 15.59 | |
| 19-Jan-24 | ST ALBANS | 10.35 | |
| 1-Feb-24 | TL ST ALBANS CITY | 33.60 | |
| 5-Feb-24 | LUTON | 2,000.00 | |
| 6-Feb-24 | ST ALBAN | 21.61 | |
| 12-Feb-24 | ZOOM US | 15.59 | |
| 15-Feb-24 | EMMANUEL OLUFEMI | 288.00 | |
| 21-Feb-24 | ST ALBANS | 19.78 | |
| 22-Feb-24 | AMZNMktplace | 29.98 | |
| 26-Feb-24 | ACCESS UNDERWRITING | 193.75 | |
| 28-Feb-24 | NANCO SERVICES | 2,000.00 | |
| 28-Feb-24 | ST ALBANS SSTN | 20.37 | |
| 28-Feb-24 | NAME-CHEAP COM HL | 27.64 | |
| 28-Feb-24 | NON GBP TRANS FEE | 0.76 | |
| 1-Mar-24 | HARPENDEN TOWN | 30.00 | |
| 11-Mar-24 | ZOOM US | 15.59 | |
| 11-Mar-24 | ACCESS UNDERWRITING | 33.51 | |
| 12-Mar-24 | TAIYE SANWO MODUPE COLE LAGOS | 170.00 | |
| 12-Mar-24 | POUNDLAND LTD | 13.75 | |
| 13-Mar-24 | AMAZON | 32.99 | |
| 13-Mar-24 | AMAZON | 26.66 | |
| 27-Mar-24 | NAME-CHEAP COM | 12.04 | |
| 27-Mar-24 | NON GBP TRANS FEE | 0.33 | |
| 10-Apr-24 | ZOOM US | 15.59 | |
| 12-Apr-24 | TESCOS STORES | 32.00 | |
| 29-Apr-24 | LNK TESCOS | 40.00 | |
| 10-May-24 | ZOOM US | 15.59 | |
| 14-May-24 | VISTAPRINT | 77.76 | |
| 16-May-24 | GRACE ALEXANDER | 50.00 | |
| 20-May-24 | AMAZON | 38.95 | |
| 28-May-24 | ST ALBANS SSTN | 20.50 | |
| 4-Jun-24 | AMAZON | 59.99 | |
| 10-Jun-24 | CO-OP GROUP | 0.10 | |
| 10-Jun-24 | CO-OP GROUP | 24.40 | |
| 10-Jun-24 | ST ALBANS SSTN | 26.08 | |
| 10-Jun-24 | PAYPAL | 48.25 | |
| 10-Jun-24 | ZOOM US | 15.59 | |
| 10-Jun-24 | MABEL OKAFOR MEDICAL SUPPORT | 20.00 | |
| 11-Jun-24 | JD + HL CHEE BEN CHEETHAM | 20.00 |
| 14-Jun-24 | ADELEKE BRITTLE BONE CONFE | 40.00 | |
|---|---|---|---|
| 17-Jun-24 | EB BRITTLE BONE | 90.00 | |
| 31-Jul-24 | COSTCO PFS | 54.66 | |
| 5-Aug-24 | MOBILE CHEQUE PAYPAL | 147.41 | |
| 16-Aug-24 | LNK NOTEMACHINE | 20.00 | |
| 16-Aug-24 | LNK NOTEMACHINE | 30.00 | |
| 20-Aug-24 | BP ST ALNANS SF CO | 39.88 | |
| 17-Sep-24 | CHRQUE DEPOSIT LLOYD | 11.45 | |
| 27-Sep-24 | NAME CHEAP.COM | 46.43 | |
| 27-Sep-24 | NON-GBP TRANS FEE | 1.27 | |
| 7-Oct-24 | TARELA DORAH AGHANTI | 30.00 | |
| 9-Oct-24 | NAME CHEAP.COM | 11.61 | |
| 9-Oct-24 | NON GBP TRANS FEE | 0.31 | |
| 11-Oct-24 | AGHANTI T D | 15.00 | |
| 4-Nov-24 | TARELA AGHANTI | 20.00 | |
| 6-Nov-24 | NAME CHEAP.COM | 23.25 | |
| 6-Nov-24 | NON GBP TRANS FEE | 0.63 | |
| TOTAL | 2,722.11 | 3,576.48 | |
YEAR END DECEMBER.2024
| YEAR END DECEMBER.2024 | YEAR END DECEMBER.2024 | YEAR END DECEMBER.2024 |
|---|---|---|
| X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X X |
||
| NET INCOME | CUMULATIVE BALANCE | |
| £ - | £ - | |
| 855.18 | ||
| 200.00 | 1,055.18 | |
| -15.59 | 1,039.59 | |
| -10.35 | 1,029.24 | |
| -33.60 | 995.64 | |
| 2,000.00 | 2,995.64 | |
| -21.61 | 2,974.03 | |
| -15.59 | 2,958.44 | |
| -288.00 | 2,670.44 | |
| -19.78 | 2,650.66 | |
| -29.98 | 2,620.68 | |
| -193.75 | 2,426.93 | |
| -2,000.00 | 426.93 | |
| -20.37 | 406.56 | |
| -27.64 | 378.92 | |
| -0.76 | 378.16 | |
| -30.00 | 348.16 | |
| -15.59 | 332.57 | |
| -33.51 | 299.06 | |
| 170.00 | 469.06 | |
| -13.75 | 455.31 | |
| -32.99 | 422.32 | |
| -26.66 | 395.66 | |
| -12.04 | 383.62 | |
| -0.33 | 383.29 | |
| -15.59 | 367.70 | |
| -32.00 | 335.70 | |
| -40.00 | 295.70 | |
| -15.59 | 280.11 | |
| -77.76 | 202.35 | |
| -50.00 | 152.35 | |
| -38.95 | 113.40 | |
| -20.50 | 92.90 | |
| -59.99 | 32.91 | |
| -0.10 | 32.81 | |
| -24.40 | 8.41 | |
| -26.08 | -17.67 | |
| 48.25 | 30.58 | |
| -15.59 | 14.99 | |
| 20.00 | 34.99 | |
| 20.00 | 54.99 |
SPEAKER
| 40.00 | 94.99 | X TRAINING X Training X Bought Feul for atending training TOTAL BAL. AS AT DEC 31ST 2024 |
|---|---|---|
| -90.00 | 4.99 | |
| -54.66 | -49.67 | |
| 147.41 | 97.74 | |
| -20.00 | 77.74 | |
| -30.00 | 47.74 | |
| -39.88 | 7.86 | |
| 11.45 | 19.31 | |
| -46.43 | -27.12 | |
| -1.27 | -28.39 | |
| 30.00 | 1.61 | |
| -11.61 | -10.00 | |
| -0.31 | -10.31 | |
| 15.00 | 4.69 | |
| 20.00 | 24.69 | |
| -23.25 | 1.44 | |
| -0.63 | 0.81 | |
| (854.37) | ||