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2021-03-31-accounts

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)

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Type of Name Address
adviser
Name of chief executive or names of senior staff members (Optional
information)
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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