**Trustees' Annual Report for the period** Period start date Period end date Day Month Year Day Month Year **From** 01 04 20 **To** 31 03 21 ## 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
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20|**Trustee name**|**Office (if any)**|**Dates acted if not for whole**
**year**|**Name of person (or body) entitled**
**to appoint trustee(if any)**| |---|---|---|---|---| ||RoyMcGunigall|Chairman||| ||Mark Hughes|Treasurer||| ||Jackie Newsham|Secretary||| ||Victoria Jenkins||16/12/19|Vote byTrustees| ||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 |**Summary of the main**
**activities undertaken for the**
**public benefit in relation to**
**these objects (include within**
**this section the statutory**
**declaration that trustees have**
**had regard to the guidance**
**issued by the Charity**
**Commission on public**
**benefit)**|**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.
**My time to be me:**
A weekly club held in 3 locations (Wallasey and Rhyl and Flint) for
siblings affected by living with a sibling with a life limiting illness or has a
immediate family member that has died or will die prematurely.
**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
friends makes referals to clinic for its members and coordinates family
support during each clinic.
**Advice and Guidance:**
Advice and guidance are offered continually. This is through events as
mentioned above and through regular phone and email contact and
through Amy and Friends secure web forum. Amy and Friends also keep
close contact with medical practitioners and researchers in order to direct
families to specialist knowledge as appropriate. Amy and Friends has
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.| |---|---| **TAR** **April 2009** 3 **Additional details of objectives and activities (Optional information)** You **may choose** to include further statements, where relevant, about: - policy on grantmaking; - policy programme related investment; - contribution made by volunteers. **TAR** **April 2009** 4 Section D Achievements and performance **Summary of the main achievements of the charity during the year** The 2021 conference was held at St David Hotel, Ewloe and access provided virtually using ZOOM. 52 families attended in person and a further 20 attended via ZOOM. 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. Additional Family support worker (Funded position) dedicated to support of families at the CS/TTD clinic and throughout the year. Additional Family support worker engaged specifically for Welsh Families (Funded position) Held a virtual International medical/scientific conference in the UK with 24 particpants. 7 attended personally. Credited as contributors on published medical journal articles. During Covid: 1. Zoom meetings taking place each week and how much of welcome these have been - mums talk/dads talk and siblings groups, these have been a huge success and will continue through 2021. 2. Over 20,000 activity packs have been sent to families who have a child with a severely life affecting illness/issue since the end of March 2020. These packs have been sent UK wide. Funding from various organisations has meant that children who are isolated have received materials and ideas with instructions (printed and sent via video link). **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** 15/12/2021 **TAR** **April 2009** 7 fp&endsf OCKAYNE SVNDROM ICHOTHIODY¥fROPHY/REiATED DISORDER SUPPORT AMY AND FRIENDS INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2021 CHARITY REGISTERED NUMBER: 1119746 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report R•portto th• tru•t•••l m•mb•r• of On accounts lor th• •nd•d 3110312021 Charlty no Ilf •nyl 111974 S•t out on yg•• 2•nd3 I report to Iwstees on my examin￿lon of the a￿fjunts ol th& abovg ¢harlty lorihe year 31 March 2021. R••pon•lbllltl•• •nd ba•1• of r•port As charitys truste8s. a￿ responsiblo lor lh8 preparntion oflhe 8e&)unts in a¢cgydarKe the r•quirem8nts ol thg charl1￿$ Act 20111lh8 Act'l. I re¢4M In respèca of my wrninaiK)n of Ihe Trusi's acttyjnts ￿M¥d oul under sedion 145 of thè 2011 Aci and in ￿r￿l¥j out my examinalK)n, I have followed all Ihè applicable Th"I*X4Jns 9ry8n by the Charity Comrnisstsm under se¢¢ion 144SXb) of Ih&Acl. Ind•p•nd•nt •xamln•r'8 ¥tat•m•nl I havè ￿Mp￿Ie¢l my 0xamina￿. I confimi that no mat8rial mallers hove corne to my att¢nlKJn in conn•xiThTr wth thè exarninatw)n glves m& cause lo boli￿e that in. any mal8rial respect.. the ac(ountiThJ f¢Ctyds were not kept In ¥c4xJrdane¢ ￿th McXKJn 130 Oltho Chariti8s Act.. LV the accthints act¢rO wth Ihe ac¢ouniln9 r•o)rds,' or Ihe accounts dK1 not Ca)mpty￿h Ihe applrable requirements C8miro Ihe lonn and conienl of acLx)unts set out in lh& Charilie5 IA¢co¢Jnls and Reports) Regula￿)n5 2C4)8 olhar Ihan any r8quirem¢nl Ihal ihe ac(y)unts gNe a 1rue and fairf which is not a rnatler ¢r)nSK1e￿ as parl ol •n in(Jepend8nt exarnin0t￿. I hove M cortsms and have c¢rne auoss Th) ￿her mattws in connectlon wilh Ihe examina￿n to which attention should be drawn in this report In or(Jer to enablè a proper vnd•rstaThJrThJ of the accounts lo be reached. Slgnod.. D￿•. l￿ap-21 Name.. Danid Hick5 Rèlevant prof•sslonaB quallflcatlon(• of l)ody111 •nyl: FCA Felbw Chartered Ac(wntant dress.. Unrt 11. k*)Id Business Park Wrexham Roa¢J Mold. CH7 1XP CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Frfends 1119746 Receipts and payments account CC16a Forth• p•rknd Pe-tt 5131-31È pE￿d date 31 4ar¢h 2021 rf12020 Section A Receipts and payments Urbr•8trlct¢d rth Ip lh• n•*vi£ R•8trfjci•d furm fvnds Totsl lund *iy• A1 R•c•l Just l•lh• lo th* n••r••i É 47.270 23.759 19,W2 6.O•J 14 6250 5.1J• 17.120 irn•ThJ•t 1731• Sub ¢o&il(Grthw In¢Th lthrARJ A8i•t •nd Inv•¥¢Thrt Ml•¥. {• W.572 11JJ4J, Sub tsi•l rothiYrt•lpts 244S72 1•&243 A3P• ciir* J Gffls Ir* CNthn ICI Trn s￿1 & omce 771 A¢ctyJf44 T￿lp1 PthS$K￿l 19 2,772 194 T¢ai 7Jl PL￿￿￿$ B4rth 5uM 7.877 5.625 25 754 241,$8J 1•?.1•7 A88•t Ind Inv•*tm•nt puKh•¥o4 18•• lab￿> Sub ￿1•1 Tot•lp•ym•nis 47.720 Neto¢re¢elpts/{p•ym•nts) AS Transfor8 b•tw•on funds Cash funds l•¥t yèar •nd C•sh funds th1$ ye•rend 47 47 1011 446 47.210 CHARITY COMMISSION FOR ENGLAND AND WAIES Amy and Frlends 1119746 Statement of assets and liablllties CC16a (cont.) lo J1 M•rtha021 Soction B Statement of assets and liabilities at the end of the period C¥ie9oik$ End¢A¥m•r B1 C••h to r4*r••tE 10 Tor•i fvnds Er#lv*m•rrt nth D•taS11 3 ••••ts Cwr•rn ¥• 84 AM•t• r•t•ln•d f th• ¢h•rlty• own u•• BS LSabllMhB Iqn ￿￿*￿91•11 lh• Ir￿￿) S$Br￿1￿￿ D•1• ol •pprov fp&endsf OCKAYNE SVNDROM ICHOTHIODY¥fROPHY/REiATED DISORDER SUPPORT AMY AND FRIENDS INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2021 CHARITY REGISTERED NUMBER: 1119746 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report R•portto th• tru•t•••l m•mb•r• of On accounts lor th• •nd•d 3110312021 Charlty no Ilf •nyl 111974 S•t out on yg•• 2•nd3 I report to Iwstees on my examin￿lon of the a￿fjunts ol th& abovg ¢harlty lorihe year 31 March 2021. R••pon•lbllltl•• •nd ba•1• of r•port As charitys truste8s. a￿ responsiblo lor lh8 preparntion oflhe 8e&)unts in a¢cgydarKe the r•quirem8nts ol thg charl1￿$ Act 20111lh8 Act'l. I re¢4M In respèca of my wrninaiK)n of Ihe Trusi's acttyjnts ￿M¥d oul under sedion 145 of thè 2011 Aci and in ￿r￿l¥j out my examinalK)n, I have followed all Ihè applicable Th"I*X4Jns 9ry8n by the Charity Comrnisstsm under se¢¢ion 144SXb) of Ih&Acl. Ind•p•nd•nt •xamln•r'8 ¥tat•m•nl I havè ￿Mp￿Ie¢l my 0xamina￿. I confimi that no mat8rial mallers hove corne to my att¢nlKJn in conn•xiThTr wth thè exarninatw)n glves m& cause lo boli￿e that in. any mal8rial respect.. the ac(ountiThJ f¢Ctyds were not kept In ¥c4xJrdane¢ ￿th McXKJn 130 Oltho Chariti8s Act.. LV the accthints act¢rO wth Ihe ac¢ouniln9 r•o)rds,' or Ihe accounts dK1 not Ca)mpty￿h Ihe applrable requirements C8miro Ihe lonn and conienl of acLx)unts set out in lh& Charilie5 IA¢co¢Jnls and Reports) Regula￿)n5 2C4)8 olhar Ihan any r8quirem¢nl Ihal ihe ac(y)unts gNe a 1rue and fairf which is not a rnatler ¢r)nSK1e￿ as parl ol •n in(Jepend8nt exarnin0t￿. I hove M cortsms and have c¢rne auoss Th) ￿her mattws in connectlon wilh Ihe examina￿n to which attention should be drawn in this report In or(Jer to enablè a proper vnd•rstaThJrThJ of the accounts lo be reached. Slgnod.. D￿•. l￿ap-21 Name.. Danid Hick5 Rèlevant prof•sslonaB quallflcatlon(• of l)ody111 •nyl: FCA Felbw Chartered Ac(wntant dress.. Unrt 11. k*)Id Business Park Wrexham Roa¢J Mold. CH7 1XP CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Frfends 1119746 Receipts and payments account CC16a Forth• p•rknd Pe-tt 5131-31È pE￿d date 31 4ar¢h 2021 rf12020 Section A Receipts and payments Urbr•8trlct¢d rth Ip lh• n•*vi£ R•8trfjci•d furm fvnds Totsl lund *iy• A1 R•c•l Just l•lh• lo th* n••r••i É 47.270 23.759 19,W2 6.O•J 14 6250 5.1J• 17.120 irn•ThJ•t 1731• Sub ¢o&il(Grthw In¢Th lthrARJ A8i•t •nd Inv•¥¢Thrt Ml•¥. {• W.572 11JJ4J, Sub tsi•l rothiYrt•lpts 244S72 1•&243 A3P• ciir* J Gffls Ir* CNthn ICI Trn s￿1 & omce 771 A¢ctyJf44 T￿lp1 PthS$K￿l 19 2,772 194 T¢ai 7Jl PL￿￿￿$ B4rth 5uM 7.877 5.625 25 754 241,$8J 1•?.1•7 A88•t Ind Inv•*tm•nt puKh•¥o4 18•• lab￿> Sub ￿1•1 Tot•lp•ym•nis 47.720 Neto¢re¢elpts/{p•ym•nts) AS Transfor8 b•tw•on funds Cash funds l•¥t yèar •nd C•sh funds th1$ ye•rend 47 47 1011 446 47.210 CHARITY COMMISSION FOR ENGLAND AND WAIES Amy and Frlends 1119746 Statement of assets and liablllties CC16a (cont.) lo J1 M•rtha021 Soction B Statement of assets and liabilities at the end of the period C¥ie9oik$ End¢A¥m•r B1 C••h to r4*r••tE 10 Tor•i fvnds Er#lv*m•rrt nth D•taS11 3 ••••ts Cwr•rn ¥• 84 AM•t• r•t•ln•d f th• ¢h•rlty• own u•• BS LSabllMhB Iqn ￿￿*￿91•11 lh• Ir￿￿) S$Br￿1￿￿ D•1• ol •pprov