**Trustees' Annual Report for the period** Period start date Period end date Day Month Year Day Month Year **From** 01 04 22 **To** 31 03 23 ## 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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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||| ||Shaun Fanning|||| ||Jodie Barden|||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| |||||| **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 |**Summary of the main**
**achievements of the charity**
**during the year**|•
Support/Advocacy
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Conference: 56 sufferers, 16 angels, 65 families, 32
scientists, 40 volunteers – New Venue (Blackpool)
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Approved Leaflets with FAQ’s e.g. nutrition
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30 x Family Support Home Visits, Sibling day (Camping),
Mum’s day, Dad’s day
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A&F Netherlands 10 year anniversary
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Scientific/Medical
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UK Clinic increased to 2x per month: 73 patients/ 65
families seen
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Numerous scientific papers published and number
recognising A&F support
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Biopharm 4x engagers
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People
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Team Safeguarding Training
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New Safeguarding Officer
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New Values and mission statement developed
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40 active volunteers (Increased from 25)
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Fundraising
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129% Increase in donations (Largely due to biannual
event)
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Will Charitable trust grant| |---|---| **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** 26/01/2024 **TAR** **April 2009** 7 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Independent Examiner's Report R•port to th• trust•tsl m•mber• of kny and Fffj•nd¥ On a¢¢ounts lor th• y4ar •ndgd 3110312023 Charity no (If any) 1110746 Sèt out on pag•• 2*nd3 I report 10 the InJstees on my exarninat￿ of the acJ 1fj.478 Sub tot•l{Gross inc¢)m8 knARJ A2 A•x•t and Inv••tm•nt Ml••, {• 13•m• 32S,4ty) .575 Tol•l r•e•lpts 117,U2 325.4QO 24B,57S A3Pa nt¥ Irrfe[￿l10n￿I ¢thrc• rÈrt Clinrt l Gh1¥ lor MTTBM ISIW SJlane3 p•rtho FU￿)r&i Fomil sup￿￿* Tr¥￿1 Statio 29.70• 255 J6.082 J.so) 30.041 1.511 51.530 J6.6•J 42.979 23.•5 101.311 36.693 76,J27 32,•50 & offic• 70 110 442 EAwnse5 A¢¢our*art Telepr￿? PrDfessionAIto SUbxDpI￿￿& JA07 3.279 956 Otferevw¥ PulCM5e Ba￿Ch su￿1 Sub loial 150.831 117 310.4 A4 A8Mt and Inv•stsn•nt pur¢h•¥o8. tabl•l Sub total Totaip•ynMnts 150.636 161.832 N•1 of re¢eipts/{poym•ntsJ A5 Transfori botweon fvnds A6 Cash lundj la¥t yèar •nd Cash ful￿S thls ye•rend 19. 24.659 a306 41.435 11 Pw1 CHARIIY COMMISSION FOR ENGLAND AND WALE5 Amy and Frionds 1119746 Statament of assets and liabilities CC16a (cont.) 31 Al•rch ZO Section B Statement of assets and liabilities at the end of the period Cat¢oofies Unrestsl¢ted lunds Restnctod nd to n•¥•¥tÉ 41.106 Et)dowmtnt Bl ¢•sh funds TSBCur•mfvm)A Trea5LyWS￿c(￿* fy¥i mrrtyreco￿ 24241 35,011 14 n••r•*t£ Totsi cash fvnds 30.652 Unr•strict•d fun 82 Oth•r rnonotary Pun¢tOwhk c￿rr•nIV￿1u• )n 83 Invefy¢m•nt Fw•io*hkh B4 A•Mt8 r•¢•In￿ lor th• ¢h•rlty's own Ur*5￿ F￿10*¥￿￿￿ *Jnountd¥• 85 Llabllltl•s S+gned by on• ortthl tru*tMA Ign b•haifol•llth•truii••sl Prfnt Pl•r CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Independent Examiner's Report R•port to th• trust•tsl m•mber• of kny and Fffj•nd¥ On a¢¢ounts lor th• y4ar •ndgd 3110312023 Charity no (If any) 1110746 Sèt out on pag•• 2*nd3 I report 10 the InJstees on my exarninat￿ of the acJ 1fj.478 Sub tot•l{Gross inc¢)m8 knARJ A2 A•x•t and Inv••tm•nt Ml••, {• 13•m• 32S,4ty) .575 Tol•l r•e•lpts 117,U2 325.4QO 24B,57S A3Pa nt¥ Irrfe[￿l10n￿I ¢thrc• rÈrt Clinrt l Gh1¥ lor MTTBM ISIW SJlane3 p•rtho FU￿)r&i Fomil sup￿￿* Tr¥￿1 Statio 29.70• 255 J6.082 J.so) 30.041 1.511 51.530 J6.6•J 42.979 23.•5 101.311 36.693 76,J27 32,•50 & offic• 70 110 442 EAwnse5 A¢¢our*art Telepr￿? PrDfessionAIto SUbxDpI￿￿& JA07 3.279 956 Otferevw¥ PulCM5e Ba￿Ch su￿1 Sub loial 150.831 117 310.4 A4 A8Mt and Inv•stsn•nt pur¢h•¥o8. tabl•l Sub total Totaip•ynMnts 150.636 161.832 N•1 of re¢eipts/{poym•ntsJ A5 Transfori botweon fvnds A6 Cash lundj la¥t yèar •nd Cash ful￿S thls ye•rend 19. 24.659 a306 41.435 11 Pw1 CHARIIY COMMISSION FOR ENGLAND AND WALE5 Amy and Frionds 1119746 Statament of assets and liabilities CC16a (cont.) 31 Al•rch ZO Section B Statement of assets and liabilities at the end of the period Cat¢oofies Unrestsl¢ted lunds Restnctod nd to n•¥•¥tÉ 41.106 Et)dowmtnt Bl ¢•sh funds TSBCur•mfvm)A Trea5LyWS￿c(￿* fy¥i mrrtyreco￿ 24241 35,011 14 n••r•*t£ Totsi cash fvnds 30.652 Unr•strict•d fun 82 Oth•r rnonotary Pun¢tOwhk c￿rr•nIV￿1u• )n 83 Invefy¢m•nt Fw•io*hkh B4 A•Mt8 r•¢•In￿ lor th• ¢h•rlty's own Ur*5￿ F￿10*¥￿￿￿ *Jnountd¥• 85 Llabllltl•s S+gned by on• ortthl tru*tMA Ign b•haifol•llth•truii••sl Prfnt Pl•r