**Trustees' Annual Report for the period** Period start date Period end date Day Month Year Day Month Year **From** 01 04 23 **To** 31 03 24 ## Section A Reference and administration details **Charity name** Amy and Friends **Other names charity is known by** |**Registered charity number (if any)**
**Charity's principal address**|**Registered charity number (if any)**
**Charity's principal address**|**Registered charity number (if any)**
**Charity's principal address**|**Registered charity number (if any)**1119746
**Charity's principal address**
OCC
Village Road
Oxton
**Postcode**
**CH43 5SR**
~~ee~~|**Registered charity number (if any)**1119746
**Charity's principal address**
OCC
Village Road
Oxton
**Postcode**
**CH43 5SR**
~~ee~~|**Registered charity number (if any)**1119746
**Charity's principal address**
OCC
Village Road
Oxton
**Postcode**
**CH43 5SR**
~~ee~~|**Registered charity number (if any)**1119746
**Charity's principal address**
OCC
Village Road
Oxton
**Postcode**
**CH43 5SR**
~~ee~~|**Registered charity number (if any)**1119746
**Charity's principal address**
OCC
Village Road
Oxton
**Postcode**
**CH43 5SR**
~~ee~~|| |---|---|---|---|---|---|---|---|---| |**Names of the charity trustees who manage the charity**||||||||| ||**Trustee name**|**Office (if any)**|**Office (if any)**||**Dates acted if not for whole**
**year**||**Name of person (or body) entitled**
**to appoint trustee(if any)**|| |1 Ro|1 RoyMcGunigall|Chairman||||||| |2 Mark Hu|2 Mark Hughes|Treasurer||||||| |3 Shaun Fannin|3 Shaun Fanning|||||||| |4 Jodie Barden|4 Jodie Barden|||||||| |5|5|||||||| |6|6|||||||| |7|7|||||||| |8|8|||||||| |9|9|||||||| |10|10|||||||| |11|11|||||||| |12|12|||||||| |13|13|||||||| |14|14|||||||| |15|15|||||||| |16|16|||||||| |17|17|||||||| |18|18|||||||| |19|19|||||||| |20|20
~~==~~|||||||| ||**Names of the trustees for the charity, if any, (for example, any custodian trustees)**|||||**Names of the trustees for the charity, if any, (for example, any custodian trustees)**||| ||**Name**||||**Dates acted if not for whole year**|||| |||||||||| |||||||||| |||||||||| |**TAR**||||1|1||**April 2009**|| **TAR** **April 2009** ## **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.
**CS 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 referals 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. 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.| |---|---| ## **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
•
Conference: 56 sufferers, 16 angels, 65 families, 32
scientists, 40 volunteers – New Venue (Blackpool)
•
Approved Leaflets with FAQ’s e.g. nutrition
•
30 x Family Support Home Visits, Sibling day (Camping),
Mum’s day, Dad’s day
•
A&F Netherlands 10 year anniversary
•
Scientific/Medical
•
UK Clinic increased to 2x per month: 73 patients/ 65
families seen
•
Numerous scientific papers published and number
recognising A&F support
•
Biopharm 4x engagers
•
People
•
Team Safeguarding Training
•
New Safeguarding Officer
•
New Values and mission statement developed
•
40 active volunteers (Increased from 25)
•
Fundraising
•
Decrease in donations (Largely due to being a gap year
for biannual event)| |---|---| **TAR** **April 2009** 5 Section D Achievements and erformance p **TAR** **April 2009** 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** ~~Ee~~ **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** 30/12/2024 ~~==~~ **TAR** 7 **April 2009** Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 eee. Mark Hughes Oct 31 2024 Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44 eee. Mark Hughes Oct 31 2024