**Trustees' Annual Report for the period** Period start date Period end date Day Month Year Day Month Year **From** 01 04 24 **To** 31 03 25 ## 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** ~~oo~~ **Names of the charity trustees who manage the charity Dates acted if not for whole Name of person (or body) entitled Trustee name Office (if any) year to appoint trustee (if any)** 1 Roy McGunigall Chairman 2 Mark Hughes Treasurer 3 Shaun Fanning 4 Jodie Barden 5 Phillipa Sellar 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 ~~oe~~ **Names of the trustees for the charity, if any, (for example, any custodian trustees) Name Dates acted if not for whole year** ## **Names of the charity trustees who manage the charity** **April 2009** **TAR** 1 ## **Names and addresses of advisers (Optional information)** |**Names and addresses of advisers (Optional information)**|**Names and addresses of advisers (Optional information)**|**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||| 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. **April 2009** **TAR** 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. 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. ## **Annual Medical/Scientific Conference:** Amy and Friends arrange for leading doctors and researchers from around the world to attend a scientific conference and present research progress and seek opportunities to collaborate as well as offer additional advice or guidance to families and to further their own knowledge about these exceptionally rare disorders. **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)** ## **CS/TTD Clinic Support:** A CS/TTD clinic has been established at St Thomas and Guys Hospital (London) for multidisciplinary meetings for sufferers. Amy and friends makes referrals to clinic for its members and coordinates family support during each clinic. The clinics have increased from monthly to twice per month. ## **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. ## **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. **April 2009** **TAR** 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. **April 2009** **TAR** 4 Section D Achievements and performance **Summary of the main achievements of the charity during the year** - Support/Advocacy • Conference: 52 sufferers, 68 families (223 family members (Parents and siblings) attended), 32 scientists, 49 volunteers – Venue (Blackpool) - • Approved Leaflets with FAQ’s e.g. nutrition - • 62 x Family Support Home Visits, Sibling trip ( 4 days Camping), Mum’s day - • Monthly Online Wellbeing sessions for adult male carers - • Weekly Online sibling activity sessions - • Bereavement and anticipatory grief support service provided for all family members/carers - • Scientific/Medical • UK Clinic increased to 2x per month: 73 patients/ 65 families seen - • Numerous scientific papers published and a number recognising A&F support - • Biopharm 4x engagers - Attended 7 scientific networking events - • People • Management skills Training • Safeguarding policy updated and trained out - • First aid training including paediactric and specialist choking - 49 active volunteers (Increased from 40) - • Jayne Hughes (CEO) recognised with British Empire medal for services to children with rare disorders - • BBC Carer of the year award - • Merseyside woman of the years: Woman of courage award - Fundraising • Increase in funds raised mainly due to a very active private individuals fundraising support. **April 2009** **TAR** 5 Section D Achievements and performance **April 2009** **TAR** 6 ## **Section E Financial review** If fundraising target was exceeded in a financial year by £5000, a reserve **Brief statement of the** account would be established and 50% of any such amount would be **charity’s policy on reserves** 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** N/A **in deficit** ~~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** 08/1/2026 ~~=~~ **TAR** 7 **April 2009** fPiend% COCKAYNE SYNDROM ICHOTHIODYSfROPHY/RELATED D150RDER SUPPORT Fta. l 11974& AMY AND FRIENDS INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025 CHARITY REGISTERED NUMBER: 1119746 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the trustO081 membèrs of Amy and Friend$ On accounts for the year ended 31 March 2025 Charity no {If any) 1119746 Set out on pages 2and3 I report lo Ihe Iruslees on my examination of the accounts of the above charity for the year ende(J 31 March 2025. ResponslbSllties and basls of report As the charitys Iruslees. you are responsible for the preparation of the accounts in accoidance with the requirements of the Charilies Act 2011 1.the Act"). I report In respect of my examination of the Trust's accounts carried out under s&clion 145 of the 2011 Act and in carrying out my examination, I hav& followed all the applicable Direclions given by the Charity Commission under section 145{5)Ib) of the Acl. Independent examlner's slatement I have compl8led my examination. I confirm that no material matters have come lo my allenlion in connection with the examination which gives mè cause lo believe that in, any material re5pecl'. the accounting records were not kepl in accordance with section 130 of the Charities Act.. or the accounts did not ac￿r￿ with the accounting fecof¢s.' or the accounts did not comply with the applicable requirements concerning the form and conlenl of accounts sel out in the Charities (Accounts and Reports} Regulations 2008 other than any requirement that the accounts give a 'liue and fair. view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other mallers in connection with the examination lo which attention should be drawn in this report in order to enable a proper understanding of the accounts lo be reached. SSgned: Date.. 31.10.25 Name.. Daniel Hicks Relevant professlonal qualificatlon(sl or body (If any): FCA Fellow Chartered Accountant Addre$$'. Unit 11, Mold Business Park Wrexham Road Mold, CH7 1XP Page 1 CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Friends 1119746 Receipts and payments account CC16a For the perlod from 01 A rol 2024 31 March 2025 Section A Receipts and payments Unrestricted fvnd¥ 10 Ihe near•ii È Restrlcted fullds 10 Ihe n•ar¢si £ Endowment lunds to lh• t)oaTe*i t Total funds Last year to the nvre¥t £ A1 Recei Just wn Childfen In Need Fund Raisin events 8 8thivltré5 Mor an Fovndallon M81n ants Global MSN COVID Bank Inieresi Sm811 ran1$ Tho Vlill Charitable Tnjsl niernsl to th• ne•rest £ Ildonab(his 166,445 166,440 78,485 24,813 22.917 56,576 700 29.167 166,968 29,167 1¢B,968 37,033 37.033 15,000 395 5N,S30 15,000 395 442 Sub total (Gross income for AR) 203,873 213,134 417,007 262,462 A2 Asset and Investment ¥Jles, Is*• Sub total Total recelpts 203,873 213,134 417.007 262,462 A3 P• ments lfjlematiortal conf1rw￿8 81¢ Gaia98 ieni Clinic a Gifts lor Chmdren MTtBM IsiNill9'5 Clubl Salanes and peng￿n$ Fundraising 8 just Scienbiic conlerences Familysuppoft 9.634 65 1,472 14,697 92,223 73,483 92,223 58.408 Slèlionery 6 office ComwièT & costs Orfice Expenses Accountan Telephone Profession81 cosls Sub5cription$ 2.127 1,017 6.73CI 1.gD9 4.577 3,818 4,577 61B 1.352 610 1.352 1.679 1.237 2,706 3.357 221 tio (Mher ex￿n5&S Purchases Bank charg0$ Sunory expenses Volunteer expense5 Insur8rKe 1,610 14,897 163 555 163 555 1.024 Sub total 191,139 1113.242 374.357 234N6 A4 Asset Jnd Inv•$tment purcha$es, Isee tsblel Sub total Total payments 191.439 183.242 374.357 234,886 Net of recelpts/(payments) A5 Transfers between fund5 A6 Cash funds last year end Cash funds this year end 12,43 29.89 42,327 27,57 13,969 67.S03 81.472 53.896 97,395 123.799 81.47 Page 1 CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Friends 1119746 CC16a (cont.) Statement of assets and liabilities For the porlod to 31 March 2025 Section B Statement of assets and liabilities at the end of the period Unrestricted funds Restrlcted funds to ntar•s¢ 1,555 35.840 Calegories Endowment funds B1 Cash funds Lk)yds TSB Curreni Acco￿1 Lk>yds Tfeasurer5 Account Gr8nl money iec'd In advance 44.904 Total Gash funds 26,404 97,395 Unfestrlcted funds R•$trlct•d funds 10 n&ar••t É 82 Other mon¢t#ry assets Fund to which Dotalls Co#t lopllonall ¢urr•ni ¥•lui 83 Investment assets lo whlch OIAg1 belon C￿t loptlonoll Co•1 loptlonfjll 84 Ass8t$ retalned for thg charlty'$ own use Fund to which AJnotsni du• ount ¢Juo 85 Llabllltles Slgn•d by on• or trvstee• {on beho11 of all the trustee$l Prlnl Nam• IC As Page 1 fPiend% COCKAYNE SYNDROM ICHOTHIODYSfROPHY/RELATED D150RDER SUPPORT Fta. l 11974& AMY AND FRIENDS INDEPENDENT EXAMINER'S REPORT ON THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025 CHARITY REGISTERED NUMBER: 1119746 CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examiner's Report Report to the trustO081 membèrs of Amy and Friend$ On accounts for the year ended 31 March 2025 Charity no {If any) 1119746 Set out on pages 2and3 I report lo Ihe Iruslees on my examination of the accounts of the above charity for the year ende(J 31 March 2025. ResponslbSllties and basls of report As the charitys Iruslees. you are responsible for the preparation of the accounts in accoidance with the requirements of the Charilies Act 2011 1.the Act"). I report In respect of my examination of the Trust's accounts carried out under s&clion 145 of the 2011 Act and in carrying out my examination, I hav& followed all the applicable Direclions given by the Charity Commission under section 145{5)Ib) of the Acl. Independent examlner's slatement I have compl8led my examination. I confirm that no material matters have come lo my allenlion in connection with the examination which gives mè cause lo believe that in, any material re5pecl'. the accounting records were not kepl in accordance with section 130 of the Charities Act.. or the accounts did not ac￿r￿ with the accounting fecof¢s.' or the accounts did not comply with the applicable requirements concerning the form and conlenl of accounts sel out in the Charities (Accounts and Reports} Regulations 2008 other than any requirement that the accounts give a 'liue and fair. view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other mallers in connection with the examination lo which attention should be drawn in this report in order to enable a proper understanding of the accounts lo be reached. SSgned: Date.. 31.10.25 Name.. Daniel Hicks Relevant professlonal qualificatlon(sl or body (If any): FCA Fellow Chartered Accountant Addre$$'. Unit 11, Mold Business Park Wrexham Road Mold, CH7 1XP Page 1 CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Friends 1119746 Receipts and payments account CC16a For the perlod from 01 A rol 2024 31 March 2025 Section A Receipts and payments Unrestricted fvnd¥ 10 Ihe near•ii È Restrlcted fullds 10 Ihe n•ar¢si £ Endowment lunds to lh• t)oaTe*i t Total funds Last year to the nvre¥t £ A1 Recei Just wn Childfen In Need Fund Raisin events 8 8thivltré5 Mor an Fovndallon M81n ants Global MSN COVID Bank Inieresi Sm811 ran1$ Tho Vlill Charitable Tnjsl niernsl to th• ne•rest £ Ildonab(his 166,445 166,440 78,485 24,813 22.917 56,576 700 29.167 166,968 29,167 1¢B,968 37,033 37.033 15,000 395 5N,S30 15,000 395 442 Sub total (Gross income for AR) 203,873 213,134 417,007 262,462 A2 Asset and Investment ¥Jles, Is*• Sub total Total recelpts 203,873 213,134 417.007 262,462 A3 P• ments lfjlematiortal conf1rw￿8 81¢ Gaia98 ieni Clinic a Gifts lor Chmdren MTtBM IsiNill9'5 Clubl Salanes and peng￿n$ Fundraising 8 just Scienbiic conlerences Familysuppoft 9.634 65 1,472 14,697 92,223 73,483 92,223 58.408 Slèlionery 6 office ComwièT & costs Orfice Expenses Accountan Telephone Profession81 cosls Sub5cription$ 2.127 1,017 6.73CI 1.gD9 4.577 3,818 4,577 61B 1.352 610 1.352 1.679 1.237 2,706 3.357 221 tio (Mher ex￿n5&S Purchases Bank charg0$ Sunory expenses Volunteer expense5 Insur8rKe 1,610 14,897 163 555 163 555 1.024 Sub total 191,139 1113.242 374.357 234N6 A4 Asset Jnd Inv•$tment purcha$es, Isee tsblel Sub total Total payments 191.439 183.242 374.357 234,886 Net of recelpts/(payments) A5 Transfers between fund5 A6 Cash funds last year end Cash funds this year end 12,43 29.89 42,327 27,57 13,969 67.S03 81.472 53.896 97,395 123.799 81.47 Page 1 CHARITY COMMISSION FOR ENGLAND AND WALES Amy and Friends 1119746 CC16a (cont.) Statement of assets and liabilities For the porlod to 31 March 2025 Section B Statement of assets and liabilities at the end of the period Unrestricted funds Restrlcted funds to ntar•s¢ 1,555 35.840 Calegories Endowment funds B1 Cash funds Lk)yds TSB Curreni Acco￿1 Lk>yds Tfeasurer5 Account Gr8nl money iec'd In advance 44.904 Total Gash funds 26,404 97,395 Unfestrlcted funds R•$trlct•d funds 10 n&ar••t É 82 Other mon¢t#ry assets Fund to which Dotalls Co#t lopllonall ¢urr•ni ¥•lui 83 Investment assets lo whlch OIAg1 belon C￿t loptlonoll Co•1 loptlonfjll 84 Ass8t$ retalned for thg charlty'$ own use Fund to which AJnotsni du• ount ¢Juo 85 Llabllltles Slgn•d by on• or trvstee• {on beho11 of all the trustee$l Prlnl Nam• IC As Page 1