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|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|||||||||| |||||SORP reference|||||| |---|---|---|---|---|---|---|---|---|---| |||||Para 1.38|||||| |Policy on|grant making||||||||| |||||Para 1.38|||||| |Policy on|social investment||||||||| |including|program||related||||||| |investment|||||||||| ||||||Members ofour||trustee|board and|medical| |||||Para 1.38|advisory|board attended||meetings|and gave| |Contribution||made|by||advice, guidance,||and challenge.||| |volunteers|||||||||| |Other|||||||||| ## |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|||| ## |Chari|name|||CDG UK| |---|---|---|---|---| |Other name the chari|||uses|| |Re istered chari||number||1191342| |Charity's|principal|address||Meadow Lodge| |||||Catshill| |||||Bromsgrove| |||||Worcestershire| |||||B61 OJL| |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|||||||| ## |Description
ofthe assets|| |---|---| |held
in this capacity|| |Name and objects ofthe|| |charity on whose behalf|the| |assets are held and how|this| |falls within the custodian|| |charity's objects|| |Details ofarrangements|for| |safe custody and|| |segregation
ofsuch assets|| |from the charity's
own assets|| ## |Names an|d addresses ofadv|isers
(Optional
information)||| |---|---|---|---|---| |Type of|Name|Address||| |adviser||||| |Name of|chief executive or names ofsenior staff members||(Optional|information)| ## ## |The tru|stees declare th|at they have approve| |---|---|---| |Signed|on behalf ofthe|charity's trustees| ||Signature(s)|J Boonnak| ||Full name(s)|Julia Louise Boonnak| |Position|(eg Secretary,|Chair| ||Chair, etc)|| |||31/08/2022|