2022-07-31-accounts - Cdg UK

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

CDG UK Ip ACCOUNTS AND ANNUAL REPORT YEAR ENDED 31 JULY 2022

O	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES	CHARITY EDNINIISSION FOR Ef/SLANO Ah)O WALES		CDG	UK Receipts and payments	UK Receipts and payments	UK Receipts and payments	UK Receipts and payments	No Df any) 1191342 accounts			cc'isa
										FOrthe periOd from			Penod start date 01/08/2021 To		Penod end date 31/07/2022
			'
~							~	.	~	~
										Unrestricted funds			Restricted funds	Endowment funds	Total	funds		Last year
										tothe	nearest	E	tothe nearest r.	tothe nearest 5	tothenearestt			tothenearestE
A1 Receipts
Donations											19,075					19,975		3A97
Event income																		450
Merchandise		sales
u	tots				ross	income		or
								AR)			19,075					19,975		3,947
A2 Asset	and			investment			sales
Isee table).
							u	oa
					Total		receipts,							-	-	le,075
A3 Pa ments
Event expenses											1,249					1,249		534
Merchandise											2,022					2,022
Postage																			74
Insurances												336					335
Advenising																		273
Suhscripiions												719					719	238
Dcnallcils																		513
Telephone and internet																	50
Bank charges																	38
						Sub total					4,993					4,993		1,532
A4 Asset	and			investment
urchases		see			table
						Sub total
				Total		payments					4	903		-	-	4,903		1,832
Net of		receiptsl(payments)									14,172					14,172		2,115
AS Transfers			between			funds
AS Cash	funds			last year			end
Cash		funds			this year			end			34,502					34,502		20,330

~		~		~	~		~ ~	~		~
						Unrestricted		Res		tflctetl	Endowment
						funds			funds		funds
						to nearest 2		to	OeafSSt K		to nearest 2
81 Cash funds			Cosh sl bank!l in hand				54,052
							450
				Total	cash funds
			(sorss bs	lsocss with rsosipie sod osv moors
					sorovllt(s))
						Unrestricted		Restdcted			Endowment
						funds			funds		funds
			Details			to nearest 2		to	nearest a		to ossnlst 5
82Other	monetary assets
			Details			Fund to which SSSStbe(oil S		Cost		(optionag	Current value o tional
83 Investment		assets
			Ds(uris			Fund asset	to which iu.ion	Cost		(optional)	Current value o iona)
84Assets retained for the
charity's	own	use
						Fuiid	to which	Amount due			When dus
			Details			liabil'	relates		o	iona)	o one l
85 Liabilities			Prolessmoal	fees		Unrestrictw)
Signed by one or two trustees on behalf of all the trustees				Signature			Print Name				Date of a rov	I
							Julia Louise Boonnsk
											PAGE 2
											31/08/2022

Objec	t	i	v	es and	Acti	viti	es
							SORP reference
Summary			ofthe purposes			of	Para 1.17	To preserve and protect good health for the
the charity				as set out	in its			public benefit by supporting those affected
governing			document					by Congenital Disorders of Glycosylation
								and funding research into Congenital
								Disorders of Glycosylation and
								disseminating all useful results into the
								public domain.
Summary ofthe main activities in relation to those							Para 1.17and u19	We supported families by keeping them updated with the latest information about
purposes			for the public					CDG via our website, our newsletters and
benefit,		in	particular,		the			our online 'Meet the CDG Experts Event'.
activities,			projects or		services			We updated and reprinted our information
identified			in the accounts.					packs for newly diagnosed families. We sent
								families merchandise so they could 'go
								green' for CDG, on CDG Awareness Day.
								We supported research into CDG by setting
								up a database of patients and encouraging
								families to join. We met with a US based
								research company and set up a meeting	with
								families interested in participating in their
								clinical trial.
								We connected with other CDG patient
								groups and pledged to sponsor the World
								CDG Conference in Portugal. We spoke	at
								several events and festivals in the South	of
								England about CDG to raise awareness.
Statement				confirming			Para 1.18	Trustees have received the guidance.
whether		the trustees			have
had regard				to the guidance
issued	by		the Charity
Commission				on public
benefit

Achiev	eme	nts	and Pe	rformance
				SORP reference
					~	3 newsletters distributed to families
						and professionals updating families
						on latest developments in the world
Summary ofthe main achievements ofthe charity,				Para C20	~	of CDG. 'Meet the CDG Experts' event talks
identifying	the	difference the				to 8families.
charity's work has made to the circumstances of its					~	Celebrated CDG Awareness day with families around the UK on social
beneficiaries and			any wider			media.
benefits to society as a					~	Website and other social media
whole.						platforms kept updated with latest
						information
					~	On Rare Disease Day we launched
						the first CDG database of patients	in
						the UK and encouraged our families
						to sign up.
					~	Updated our CDG information packs
						for new families diagnosed with
						CDG.
					~	We met Glycomine, a US based drug
						development company online, to
						encourage interested parents to ask
						questions and find out more about
						the upcoming clinical trials in the UK.
					~	We spoke to the audience at 'An
						Evening with Frank Bruno', about
						CDG, to raise funds and awareness.
					~	We secured donations from one
						Page	l 6

Financial Review	Financial Review
Review ofthe charity's			Para 1.21	The charity's assets remained	stable for the
financial position at	the end			period, there was a large excess ofincome
ofthe eriod				over ex enditure.
Statement explaining	the		Para 1.22	Reserves are held for future	projects such as
policy for holding reserves				grants for families, research and family
statin wh the are	held			events.
Amount of reserves	held		Para 1.22	F34,502
Reasons for holding	zero		Para 1.22	N/A
reserves
Details offund materially		in	Para 1.24	N/A
deficit
Explanation of any			Para 1.23	N/A
uncertainties about	the
charity continuing as a going
concern

The charity's principal sources of funds (including	Para 1.47
any fundraising)
Investment policy and objectives including any	Para 1.46
social investment policy
adopted
A description ofthe principal	Para 1.46
risks facing the charity
Other

Description ofcharity's
trusts:
Type of governing document	Para 1.25	Constitution
trust deed, ro al charter
How is the charity	Para 1.25	CIO foundation
constituted?
(e.g unincorporated
association, CIO)
Trustee selection methods	Para 1.25	Every trustee	appointed		by a resolution
including details of any		passed at a properly		convened		meeting		for
constitutional provisions e.g.		the charity trustees.		In	selection,	the charity
election to post or name of		has regard to	the skills,		knowledge		and
any person or body entitled		experience needed for			the effective
to appoint one or more		administration	ofthe	CIO.
trustees

any person or body entitl to appoint one or more trustees	ed	ed	experience needed administration ofthe
Additional information	(optional)
You ma choose to include further statements			where relevant about:
Policies and procedures adopted for the induction	and	Para 1.51
training oftrustees
The charity's organisational structure and any wider		Para 1.51
network with which the
charity works
Relationship with any related		Para 1.51
parties
Other

mes	ofthe charity tru	ofthe charity tru	stees who manage	the charity
	Trustee name		Office (ifany)	Dates acted ifnot for whole ear	Name toa	ofperson lor body) entitled ointtrustee ifan
	Julia Boonnak		Chair
	Will Boonnak		Treasurer
	Chantelle	Dixon	Secretary
4	Nicole Rourke
5	Tim Jardine
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20

Names an	d addresses ofadv	isers (Optional information)
Type of	Name	Address
adviser
Name of	chief executive or names ofsenior staff members		(Optional	information)