## **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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8
9
10
11
12
13
14
15
16
17
18
19
20
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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)**|||
||||
||||