**Trustees' Annual Report for the period** Period start date Period end date Day Month Year Day Month Year **From** 01 04 21 **To** 31 03 22 ## Section A Reference and administration details ## **Charity name** Amy and Friends **Other names charity is known by Registered charity number (if any)** 1119746 **Charity's principal address** OCC Village Road Oxton **Postcode CH43 5SR** ## **Names of the charity trustees who manage the charity** |1
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**to appoint trustee(if any)**| |---|---|---|---|---| ||RoyMcGunigall|Chairman||| ||Mark Hughes|Treasurer||| ||Victoria Jenkins|||| ||Spencer Jenkins|||| ||Shaun Fanning|||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| **Names of the trustees for the charity, if any, (for example, any custodian trustees)** **Name Dates acted if not for whole year** **TAR** **April 2009** 1 ## **Names and addresses of advisers (Optional information)** **Type of adviser Name Address** ## **Name of chief executive or names of senior staff members (Optional information)** Jayne Hughes ## **Section B Structure, governance and management** ## **Description of the charity’s trusts** Constitution Type of governing document (eg. trust deed, constitution) Association How the charity is constituted - (eg. trust, association, company) Elected by existing trustees Trustee selection methods - (eg. appointed by, elected by) ## **Additional governance issues (Optional information)** You **may choose** to include additional information, where relevant, about: - policies and procedures adopted for the induction and training of trustees; - the charity’s organisational structure and any wider network with which the charity works; - relationship with any related parties; - trustees’ consideration of major risks and the system and procedures to manage them. ## **Section C Objectives and activities** **Summary of the objects of the charity set out in its governing document** For the relief of people suffering with Cockayne Syndrome, TTD and related disorders and the preservation and protection of the good health of the families and carers of such persons. **TAR** **April 2009** 2 **Annual Members Retreat:** This is Amy and Friends main activity. Amy and Friends organise a 3 day retreat over a weekend for children and young people affected by Cockayne Syndrome, their parents, brothers, sisters or carers. Families have the opportunity to spend time in each other’s company and to share experiences and support one another. Amy and Friends arrange for leading doctors and researchers to attend to offer additional advice or guidance and to further their own knowledge about this exceptionally rare disorder. During the retreat every opportunity to have fun is fully taken through organisation of a party, children’s entertainment and a family excursion and sibling activities. It is an opportunity to relax, to not feel isolated in a loving, caring environment. **CS Clinic Support:** A monthly CS/TTD clinic has been established at St Thomas and Guys Hospital (London) for multidisciplinary meetings for sufferers. Amy and **Summary of the main** friends makes referals to clinic for its members and coordinates family **activities undertaken for the** support during each clinic. **public benefit in relation to these objects (include within Advice and Guidance: this section the statutory** Advice and guidance are offered continually. This is through events as **declaration that trustees have** mentioned above and through regular phone and email contact and **had regard to the guidance** through Amy and Friends secure web forum. Amy and Friends also keep **issued by the Charity** close contact with medical practitioners and researchers in order to direct **Commission on public** families to specialist knowledge as appropriate. Amy and Friends has **benefit)** also developed a relationship with Thomas and Guys Hospital which is going to lead to the formation of a multi-disciplinary CS clinic run in conjunction with our support group. **Advocacy:** Amy and Friends continually work to further knowledge about Cockayne Syndrome with Health professionals, politicians and policy makers and the general community. This has been achieved through regular media coverage, community events and conference organisation. We are also actively supporting research into the disease. **Family Support Workers:** Amy and Friends provides a family support worker who assists in hospital visits, medical support and advice and guidance for families etc. All planned activities are considered against the Charity commission guidance on public benefit. ## **Additional details of objectives and activities (Optional information)** **TAR** **April 2009** 3 You **may choose** to include further statements, where relevant, about: - policy on grantmaking; - policy programme related investment; - contribution made by volunteers. Section D Achievements and performance **TAR** **April 2009** 4 ## Section D Achievements and erformance p The 2022 conference was held at St David Hotel, Ewloe and access **Summary of the main** provided virtually using ZOOM. 122 adults, 97 children, 20 **achievements of the charity** researchers/clinicians and 25 volunteers at this years conference **during the year** Now supporting in excess of 1300 families in total. Amy and Friends has been able to engage families from the Asian community within the UK and offer support and guidance. Held an International medical/scientific conference in the UK with 32 particpants. 20 attended personally. Credited as contributors on published medical journal articles. Clinic (London) held twice a month for 5 families which is double what it started as. **TAR** **April 2009** 5 Section D Achievements and erformance p **TAR** **April 2009** 6 ## **Section E Financial review** **Brief statement of the charity’s policy on reserves** If fundraising target was exceeded in a financial year by £5000, a reserve account would be established and 50% of any such amount would be placed in this account, the other 50% to be available for use by the organisation for the development of new services. **Details of any funds materially in deficit** N/A ## **Further financial review details (Optional information)** You **may choose** to include additional information, where relevant about: - the charity’s principal sources of funds (including any fundraising); - how expenditure has supported the key objectives of the charity; - investment policy and objectives including any ethical investment policy adopted. ## **Section F Other optional information** ## **Section G Declaration** **The trustees declare that they have approved the trustees’ report above.** **Signed on behalf of the charity’s trustees** **Signature(s) Full name(s)** Mark Hughes **Position (eg Secretary, Chair, etc)**[Treasurer ] **Date** 09/01/2022 **TAR** **April 2009** 7 fP".endsi COCI(AYNE SYTrJDROM ICHOTHIODY5TROPHY/RELA TEO D150RDER SUPPOkT AMY AND FRIENDS INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2022 CHARITY REGISTERED NUMBER: 1119746 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report R•port to th• truste0￿ m•mb•r¥ of Amy and Frv4nd¥ On Jccounts lor thg y•ar •nd•d J1103ra022 Charlty no Itl •ny} 1115746 S•t out on ￿9•¥ 2•nd3 I report to th• Ir115tees on my examinatThi of the acLoun¢s of the above charfty for the year en¢Js(131 March 2022. R••ponJlbSlltl•8 and ￿80• of rnport As Iho tharivs tN$tees. afg ￿￿nSIb￿ lor the preParat￿n ol thè aco)Lsnts in accord•rbce vthh Ihè tgqutrem8nts of the Charthos Act 2011 1.the Atri. I raport in respect of my examinatk)n of the Trust'5 accounts ￿Tried out un¢Jer seclK)n 145 of Ihe 2011 Act and in caryng (Mjt my $xarninalK*n. I h8ve followed 11 the appltsble DirectK>n$ 9Nen by Ihè Chafty CommisS￿n under Section 145(5Xbl of the N£t. Indopond•nt ox•mln•r'i stalem•nt I have completed rny examinatDn. I conlirrn that no maiorial matt8rs have CLJrne to my attentth in COnnect￿n wrth the examinaD'on which gives me cause to e Ihat in. any maierial respect.. the aC0)un￿￿J records w8r• not kepl In a¢o)rdanc& wilh SeCtK￿ 130 ol th8 ¢hanties or thtr accounts did Th)t Kcord wilh accounting re￿rdS,. or the acccMJnts did nol cijmply wrth the applieable requirèments concemin9 Ihe form and o)ntent of a¢cwnls sel out in the Cttarilws IAcwunls and Reportsl Ragulalions 2008 other than any requirement that Ihe accounts give a'tru• and fair. view %thich Is r*ot a Matter considered as part of an independent eyaminati)n. I havè rK* concems and have c￿& across no Other matters in connedlon wilh the examinalion to which altentKJn sholtld be ￿ra￿rn In this report in order lo enable a proper vnderslanding of the accounts lo be rtsached. Sign•d: Dat•: 14-SÈp-22 Daniel HicJÉs Rel•vant profes$lonal quallficatJon(sl or body IWany}'. FCA Fdk)w Chartered Accountant dr•ss: Unrt 11. Mold Business Park Wrexham Road Id.CH7 1XP CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Friends 1119746 Receipts and payments account CC16a PorthD period 12020 31 4uch 2021 Section A Receipts and payments Efvdo￿• luhds fvThd8 tt*ihp r￿￿£ lun4ts T4)tsl fund• L•st y•ar A1 R￿91 J￿1 io th n•w••t£ 41.425 10.r 24,18J 6.250 5.136 Flrt Ra 19.71• KISN covio B•rth Sm¥ 1.329 JS.152 17 Svb tot•llGross inccrfn8 forAR) 241.072 A2 A•8•t •nd Inv•stm•nt Ml•8.11•• Sub loi•l TOtslrnc￿pts 1J•.10• 241.J70 244,172 A3P 3&741 & Gthls fty MfT8MISIL4 kn C 12.191 16.11 4•.i•J 15.7NJ 27.19• S2.1¥ 101.311 •.113 32. 93.0•5 F• Tr•v 482 932 i.t57 T*ptr¢ 3,194 Srt4ctlkrtKY •Ap•r4es Pwchzs85 Bark4 t Swé 421 421 2M77 454 Sub tol•l A4 A¥$ot and i￿￿81M•￿ Pu￿h•￿8, l¥0• tabl•l Sub lot81 Tot•lp•ymenls 131,518 111.5111 Plel of rnewpl￿P9Yrn￿tsJ . AS TraMf•rs b•lw••n lunds A6 C¥¥h lunds lasl year end C•sh funds Ihl$ yw end 18,577 2,011 37.706 3.72 41,435 43.446 4Q•fy4 41.135 CHARITY COMMISSION FOR ENGLAND ANO WALES Amy and Friends 1119746 CC16a {cont.) Statement of assets and liabillties F¢* the p•rtod 31 klwch 2D22 Section B Statement of assets and liabilities at the end of the period Coiegori R•strfGt•d fvnd Dotails Endry*m•nt funds ¥w•stÉ B1 Cash lund• 3S.frfJé ?? U3 Total¢aslJ fimds 2415• R•strb¢t•d fund¥ B2 Other mo ¥rr•ni Yil B3 Inv••tm•nt ••••ts Fwd IOwh*h Covtlopl10 B4 A¥s•ts r•t•lned lry th• charlty'• own u Amount4y• BS Llablllllos $4gn•d by ON Or IruAt••* b•h4110l*ll lh• tru•thNI Pthrt 14•m• P¥w3 fP".endsi COCI(AYNE SYTrJDROM ICHOTHIODY5TROPHY/RELA TEO D150RDER SUPPOkT AMY AND FRIENDS INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2022 CHARITY REGISTERED NUMBER: 1119746 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report R•port to th• truste0￿ m•mb•r¥ of Amy and Frv4nd¥ On Jccounts lor thg y•ar •nd•d J1103ra022 Charlty no Itl •ny} 1115746 S•t out on ￿9•¥ 2•nd3 I report to th• Ir115tees on my examinatThi of the acLoun¢s of the above charfty for the year en¢Js(131 March 2022. R••ponJlbSlltl•8 and ￿80• of rnport As Iho tharivs tN$tees. afg ￿￿nSIb￿ lor the preParat￿n ol thè aco)Lsnts in accord•rbce vthh Ihè tgqutrem8nts of the Charthos Act 2011 1.the Atri. I raport in respect of my examinatk)n of the Trust'5 accounts ￿Tried out un¢Jer seclK)n 145 of Ihe 2011 Act and in caryng (Mjt my $xarninalK*n. I h8ve followed 11 the appltsble DirectK>n$ 9Nen by Ihè Chafty CommisS￿n under Section 145(5Xbl of the N£t. Indopond•nt ox•mln•r'i stalem•nt I have completed rny examinatDn. I conlirrn that no maiorial matt8rs have CLJrne to my attentth in COnnect￿n wrth the examinaD'on which gives me cause to e Ihat in. any maierial respect.. the aC0)un￿￿J records w8r• not kepl In a¢o)rdanc& wilh SeCtK￿ 130 ol th8 ¢hanties or thtr accounts did Th)t Kcord wilh accounting re￿rdS,. or the acccMJnts did nol cijmply wrth the applieable requirèments concemin9 Ihe form and o)ntent of a¢cwnls sel out in the Cttarilws IAcwunls and Reportsl Ragulalions 2008 other than any requirement that Ihe accounts give a'tru• and fair. view %thich Is r*ot a Matter considered as part of an independent eyaminati)n. I havè rK* concems and have c￿& across no Other matters in connedlon wilh the examinalion to which altentKJn sholtld be ￿ra￿rn In this report in order lo enable a proper vnderslanding of the accounts lo be rtsached. Sign•d: Dat•: 14-SÈp-22 Daniel HicJÉs Rel•vant profes$lonal quallficatJon(sl or body IWany}'. FCA Fdk)w Chartered Accountant dr•ss: Unrt 11. Mold Business Park Wrexham Road Id.CH7 1XP CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Friends 1119746 Receipts and payments account CC16a PorthD period 12020 31 4uch 2021 Section A Receipts and payments Efvdo￿• luhds fvThd8 tt*ihp r￿￿£ lun4ts T4)tsl fund• L•st y•ar A1 R￿91 J￿1 io th n•w••t£ 41.425 10.r 24,18J 6.250 5.136 Flrt Ra 19.71• KISN covio B•rth Sm¥ 1.329 JS.152 17 Svb tot•llGross inccrfn8 forAR) 241.072 A2 A•8•t •nd Inv•stm•nt Ml•8.11•• Sub loi•l TOtslrnc￿pts 1J•.10• 241.J70 244,172 A3P 3&741 & Gthls fty MfT8MISIL4 kn C 12.191 16.11 4•.i•J 15.7NJ 27.19• S2.1¥ 101.311 •.113 32. 93.0•5 F• Tr•v 482 932 i.t57 T*ptr¢ 3,194 Srt4ctlkrtKY •Ap•r4es Pwchzs85 Bark4 t Swé 421 421 2M77 454 Sub tol•l A4 A¥$ot and i￿￿81M•￿ Pu￿h•￿8, l¥0• tabl•l Sub lot81 Tot•lp•ymenls 131,518 111.5111 Plel of rnewpl￿P9Yrn￿tsJ . AS TraMf•rs b•lw••n lunds A6 C¥¥h lunds lasl year end C•sh funds Ihl$ yw end 18,577 2,011 37.706 3.72 41,435 43.446 4Q•fy4 41.135 CHARITY COMMISSION FOR ENGLAND ANO WALES Amy and Friends 1119746 CC16a {cont.) Statement of assets and liabillties F¢* the p•rtod 31 klwch 2D22 Section B Statement of assets and liabilities at the end of the period Coiegori R•strfGt•d fvnd Dotails Endry*m•nt funds ¥w•stÉ B1 Cash lund• 3S.frfJé ?? U3 Total¢aslJ fimds 2415• R•strb¢t•d fund¥ B2 Other mo ¥rr•ni Yil B3 Inv••tm•nt ••••ts Fwd IOwh*h Covtlopl10 B4 A¥s•ts r•t•lned lry th• charlty'• own u Amount4y• BS Llablllllos $4gn•d by ON Or IruAt••* b•h4110l*ll lh• tru•thNI Pthrt 14•m• P¥w3