## **Trustees’ Annual Report for the period** **From 30th June 2020 (Period start date) - To 31st March 2021 (Period end date) Charity name: Nicolaides-Baraitser Syndrome (NCBRS) Worldwide Foundation Charity registration number: 1190194** ## **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 sickness and the**
**preservation and protection of good**
**health of persons suffering from**
**Nicolaides Baraitser Syndrome**
**worldwide through the provision of**
**support, education, practical advice,**
**annual conferences, welcome**
**packages, small grants and the**
**funding of research studies into**
**Nicolaides Baraitser Syndrome, the**
**useful results of which will be**
**published for the public benefit.**| |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|**We hold meetings for affected**
**families of NCBRS.**
**We keep our website and social**
**media up to date with information.**
**We connect with other organisations**
**that benefit the people living with**
**NCBRS.**
**We send welcome packs to families.**
**We make grants.**
**We will advocate for research into**
**NCBRS**| |Statement confirming
whether the trustees have
had regard to the guidance
issued by the Charity
Commission on public
benefit|Para 1.18|**The Trustees are always mindful of**
**the guidance issued by the Charity**
**Commission on public benefit and**
**discharge these responsibilities by**
**holding regular talks within our**
**trustees quarterly meetings.**| ## **Additional information (optional)** You may choose to include further statements where relevant about: ||SORP reference|| |---|---|---| |Policy on grant making|Para 1.38|**We make grants when it will assist**
**our patients affected by NCBRS and**
**their families and/or to promote**
**medical research into NCBRS.**| |Policy on social investment
including program related
investment|Para 1.38|**The trustees have invested in our**
**website and zoom conferencing.**| |Contribution made by
volunteers|Para 1.38|**The Trustees, as unpaid volunteers,**
**recognise the input of all our**
**volunteers (6 at 31st March 2021**
**including the 3 trustees) The CIO is**
**entirely dependant on all its**
**volunteers to effectively run the CIO.**
**We operate with no paid staff.**| |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|**Due to the ongoing coronavirus**
**pandemic we’re unable to hold our**
**usual face-to-face conference/s (two**
**cancelled in 2020) so all of our**
**activities are held virtually at the**
**moment. We’ve held several Zoom**
**conferences at least every 2 months**
**or more for affected families**
**worldwide, of which we’ve had**
**doctors/geneticists in the field**
**speaking at the events.**
**We created an online shop where**
**people can purchase NCBRS apparel.**
**We held our first ever worldwide**
**awareness day on 9th October 2020.**
**We have partnered with Rare Disease**
**International and Rare Disease Day to**
**further spread awareness of NCBRS.**
**We have partnered with the**
**Coordination of Rare Diseases at**
**Sanford (CoRDS) to create and**
**establish a patient registry.**
**We have partnered with FaceMatch to**
**see weather facial recognition**
**technology can determine a**
**diagnosis of NCBRS.**
**We have created our welcome packs**
**to send to new and existing families.**
**We have completely revamped our**
**website and logos.**| ## **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|**Following our first awareness day’s**
**success and the continued support**
**in donations from our families and**
**the general public globally and sales**
**from the NCBRS apparel, the**
**trustees, can report that we are in a**
**strong financial position from when**
**we became a charity in June 2020.**
**This will enable us to continue our**
**objectives to help the NCBRS**
**community.**
**Bank and cash reserves at 31 March**
**2021 were £1,000, £1,000 up on the**
**position at the beginning of the**
**financial period (30th June 2020 -**
**Usually 1st April each year).**| |---|---|---| |Statement explaining the
policy for holding reserves
stating why they are held|Para 1.22|**Reserves comprise entirely of Bank**
**and cash funds, these are held to**
**facilitate our future operational costs**
**for two years.**| |Amount of reserves held|Para 1.22|**£1,000**| |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|**There are no uncertainties.**| ## **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|**Donations - the primary source is**
**Facebook Fundraisers and our**
**Paypal donate. We had a family hold**
**a fundraising run in aid of the**
**awareness day in October 2020 in**
**Ireland, with which the funds where**
**donated to the Foundation. We had**
**another person hold a 12 hour online**
**gaming stream, again with which the**
**funds where donated to the**
**Foundation.**
**We are also partnered with**
**AmazonSmile and EasyFundraising.**| |---|---|---| |Investment policy and
objectives including any
social investment policy
adopted|Para 1.46|**We aim to generate sufficient funds**
**for our current and future activities.**
**We also invest in our website and**
**zoom conferencing at present.**| |A description of the principal
risks facing the charity|Para 1.46|**The risks are limited to an inability to**
**continue to generate funds to**
**continue our objectives.**| |Other||| ## **Structure, Governance and Management** |Description of charity’s
trusts:||| |---|---|---| |Type of governing document
(trust deed, royal charter)|Para 1.25|**Charitable Incorporated Organisation**
**whose only voting members are its**
**charity trustees.**| |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|**Apart from the first charity trustees,**
**every trustee must be appointed for a**
**term of three years by a resolution**
**passed at a properly convened**
**meeting of the charity trustees. In**
**selecting individuals for appointment**
**as charity trustees, the charity**
**trustees must have regard to the**
**skills, knowledge and experience**
**needed for the effective**
**administration of the CIO.**| ## **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||| ## **Reference and Administrative details** |Charity name|**Nicolaides Baraitser Syndrome (NCBRS)**
**Worldwide Foundation**| |---|---| |Other name the charity uses|**NCBRS Worldwide Foundation**
**NCBRS Parent Support**| |Registered charity number|**1190194**| |Charity’s principal address|**Kemp House**
**152-160 City Road**
**London**
**EC1V 2NX**
**United Kingdom**| ||| ## **Names of the charity trustees who manage the charity** ||**Trustee name**|**Office (if any)**|**Dates acted if not**
**for whole year**|**Name of person (or body)**
**entitled to appoint trustee**
**(if any)**| |---|---|---|---|---| |1
2
3|**Lee Reavey**|**CEO**||| ||**Helen Robinson**|**Chair**||| ||**Michelle Reavey**|**Trustee**||| 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|| |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)** **----- Start of picture text -----**
Type of Name Address
adviser
Name of chief executive or names of senior staff members (Optional
information)
**----- End of picture text -----**
## **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) Lee Reavey Helen Robinson Position (eg Trustee Chair Secretary, Chair, etc) Date 01-04-2021** ||**Charity Name**|**Charity Name**|**Charity Name**|**Charity Name**|**Charity Name**|**No(if any)**|**No(if any)**||**CC16a**| |---|---|---|---|---|---|---|---|---|---| ||**NIcolaides Baraitser Syndrome (NCBRS) Worldwide Foundation**|||||**1190194**|||| ||**Receipts andpayments accounts**||||||||| ||**For the period**
**from**||Period start date||**To**||Period end date||| ||||**30-06-2020**||||**31-03-2021**||| ||||||||||| |**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 £**| |**A1 Receipts**|||||||||| |Donations|**13,020**||**-**||**-**||**13,020**||**-**| |AmazonSmile & EasyFundraising|**56**||**-**||**-**||**56**||**-**| |Merchandise - Redbubble - Profit|**271**||**-**||**-**||**271**||**-**| |**_Sub total_**_(Gross income for AR) _|
**13,348**||**-**||**-**||**13,348**||**-**| ||||||||||| |**A2 Asset and investment sales,**
**(see table).**|||||||||| ||**- 0**||**- 0**||**- 0**||**-**||**- 0**| |**_Sub total _**|
**- 0**||**- 0**||**- 0**||**-**||**- 0**| ||||||||||| |**_Total receipts_ **|
**13,348**||**- 0**||**- 0**||**13,348**||**- 0**| ||||||||||| |**A3 Payments**|||||||||| |Operational Costs|**298**||**-**||**-**||**298**||**-**| |Postage, Packaging, Stationery|**180**||**-**||**-**||**180**||**-**| |Welcome Packs|**398**||**-**||**-**||**398**||**-**| |Awareness Products (Lanyard & Wristband)|**395**||**-**||**-**||**395**||**-**| |**_Sub total_ **|
**1,271**||**-**||**-**||**1,271**||**-**| ||||||||||| |**A4 Asset and investment**
**purchases,(see table)**|||||||||| ||**- 0**||**- 0**||**- 0**||**-**||| |**_Sub total_ **|
**-0**||**-0**||**-0**||**-**||**- 0**| ||||||||||| |**_Totalpayments_ **|
**1,271**||**- 0**||**- 0**||**1,271**||**- 0**| ||||||||||| |**_Net of receipts/(payments)_ **|
**12,077**||**-**||**-**||**12,077**||**-**| |**A5 Transfers between funds**|**- 0**||**-**||**-**||**-**||**-**| |**A6 Cash funds lastyear end**|**- 0**||**-**||**-**||**-**||**-**| |**_Cash funds thisyear end_ **|
**12,077**||**-**||**-**||**12,077**||**-**| ||||||||||| ||||||||||| |**Section B Statement of assets and liabilities at the end of the period**|||||||||| |**Categories**|**Details**||||**Unrestricted funds**||**Restricted funds**||**Endowment**
**funds**| ||||||**to nearest £**||**to nearest £**||**to nearest £**| |**B1 Cash funds**|**Bank**||||**12,062**||**-**||**-**| ||**Petty Cash**||||**15**||**-**||**-**| ||||||**-**||**-**||**-**| ||**_Total cash funds_**||||**12,077**||**-**||**-**| ||(agree balances with receipts and payments
account(s))||||OK||||OK| ||||||**Unrestricted funds**||**Restricted funds**||**Endowment**
**funds**| ||**Details**||||**to nearest £**||**to nearest £**||**to nearest £**| |**B2 Other monetary assets**|||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| ||||||**-**||**-**||**-**| CCXX R1 accounts (SS) 01/04/2021 1 ||||||**-**||**-**||**-**| |---|---|---|---|---|---|---|---|---|---| ||||||||||| ||**Details**||||**Fund to which asset**
**belongs**||**Cost (optional)**||**Current value**
**(optional)**| |**B3 Investment assets**|||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||||| ||**Details**||||**Fund to which asset**
**belongs**||**Cost (optional)**||**Current value**
**(optional)**| |**B4 Assets retained for the**
**charity’s own use**|||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||**-**||**-**| ||||||||||| ||**Details**||||**Fund to which liability**
**relates**||**Amount due**
**(optional)**||**When due**
**(optional)**| |**B5 Liabilities**|||||||**-**||| ||||||||**-**||| ||||||||**-**||| ||||||||**-**||| ||||||||**-**||| ||||||||||| |Signed by one or two trustees on behalf
of all the trustees|Signature||||Print Name||||Date of approval| ||||||**Lee Reavey**||||**01-04-2021**| ||||||**Helen Robinson**||||**01-04-2021**| CCXX R2 accounts (SS) 01/04/2021 2