2024-03-31-accounts - Amy And Friends

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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

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

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

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

Section D Achievements and erformance p

TAR

April 2009

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

eee. Mark Hughes Oct 31 2024

Zoho Sign Document ID: 30E395EA-DG9RWO8VE0PSCWUV63WOW5VLAOJ9HD6JJYXIN7TMT44

eee. Mark Hughes Oct 31 2024