Company registration number. 3557191
Charity registration number- 1071196
Alstrom Syndrome UK
(A company limited by guarantee)
Annual Report and Fin8ncial Statements
for the Year Ended 31 March 2024
WESTCOTTS
HAR TERED ACCOSJNTANTS
8 OUSINESS AOVtSÉA$

Alstrom Syndrome UK
Reference and Administrative Details
Trustees:
Prof Timothy Barrett
Sharon Bates
Jane Biglin
Melissa Crowland {resigned 31 March 2024)
Haris Hamid
Tarekegn Hiwot
Alexandra Line (appointed 1 April 2024}
Richard Paisey {resigned 22 November 20231
Trevor Parkin (appointed 21 June 2023)
Carol Prescott
Katie Stadden (resigned 25 October 2023)
Mathilde Yates
Charlty Reglstratlon Number
1071196
Company Registratlon Number 3557191
The charity is incorporated in England & Wales.
4 St Kitts Close
Torquay
Devon
TQ2 7GD
We5tcotts (SWI LLP
47 Boutport Street
Barnstaple
Devon
EX311SQ
Reglstered Office
Independent Examiner
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Alstrom Syndrome UK
Trustees. Report
The trustees, who are directors for the purposes of company law, present the annual report together
with the financial statements of the charitable company for the year ended 31 March 2024.
STRUCTURE, GOVERNANCE AND MANAGEMENT
Governlng Document
The organisation is a charitable company, limited by guarantee, incorporated on 1st May 1998 and
registered as a charity in the UK on 25th August 1998. The company was established under a
memorandum of association which estsblished the objectives and powers of the charitable company
and is governed under its articles of association.
Recrultment and Appolntment of Trustees
New Trustees are appointed by the existing Trustees and serve for three years after which they may
put themselves fO￿ard for re-appointment. Trustees can serve a maximum of three terms of three
years, a total of nine years at which point they must resign from the board. They can serve on an
Alstrom Syndrome UK {ASUKI patient advisory or project group after this. If a vacancy becomes
available, they may apply to re-join the Board after 2 period of 12 months. The Board actively recruit
those who are directly affected by Alstrom Syndrome (ASI and family members, ensuring that the
charity remains patient led and those with lived experience remain at the heart of the work of the
charity.
Inductlon and Trainlng of Tru8teo8
New Trustees are given a copy of the memorandum and articles of association and are given copies
of the Charity Commission guidance "The Essential Trustee. What you need to know, what you need
to do" as well as links to the Charity Commission and Government website outlining the
responsibilities of the Trustee role,
New Trustees have a six-month induction period during which they can be assigned a Trustee mentor
who can provide advice and 9uidance. New Trus',ees receive an induction pack containing key
information to gain a further understanding of ASUK and its, strategic priorities, and an opportunity to
observe at a board meeting. They are invited to meet with the Board of Trustees, the Chief Executive
and the staff team as well as patients and their families.
ASUK Board of Trustees
Richard Paisey, appointed on 7th February 2015, retired on 22nd November 2023
Sharon Bates, appointed on 2nd November 2019
Tim Barrett, appointed on 2nd November 2019
Melissa Crowland, appointed on 2rsd November 2019, retired on 31 st March 2024
Haris Hamid, appointed on 9th March 2022
Carol Prescott, appointed on 9th March 2022
Jane Biglin, appointed on 18th July 2022
Mathilde Yates, appointed on 18th July 2022
Katie Staddon, appointecl on 22nd March 2023, retired on 25th October 2023
Trevor Parkin, appointed on 21 st June 2023
Tarekegn Hiwot, appointed on 23rd November 2023
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Alstrom Syndrome UK
Trustees. Report
OBJECTIVES AND ACTIVITIES
Public benefit
Objectives and activities
Purposes and aims
ASUK'S objectives, as set out in the company's memorandum of associatlon, are.,
The relief of sickness of persons with Alstrom Syndrome, in particular, but not exclusively by
the provision of support, advice and infofmation for such persons, their families, carers and
those working with affected individuals.
The promotion of research into Alstrom Syndrome and related syndromes in the UK and
abroad and the public dissemination of the useful results thereof.
ACHIEVEMENTS AND PERFORMANCE
Alstrom Syndrome UK IASUK} has a skilled and experienced team including a Board of Trustees,
Volunteers, Chief Executive, Global Executive Director, Finance Manager, Office Manager, 2 Care
Coordinators, Transition Coordinator, Community Inclusion Coordinator, Community Outreach
Coordinator, Patient and Public Involvement & Engagement Coordinator and a Wellbeing Coordinator.
In May 2023, ASUK celebrated our 25th anniversary and we took the time to reflect on how far the
charity has developed over the years. We are proud of all that we have achieved and will always be
forever grateful to the families, professionals, funders and collaborators that have supported us along
the way. The health and wellbeing of people living with Alstrom Syndrome (AS) will always remain at
the heart of everything we do.
The Family Support Team provides a flexible and inclusive package of support for individuals and
families living with AS. We have a diverse population with families speaking 17 different languages.
On the 31st March 2024, there were 91 people diagnosed with AS in the UK,. 54 {590/0l were born
male, 37 {410/ol born female and 501550/018re from an ethnic minority community. We are supporting
small number of refugees who do not have settled status in the UK, living in temporary
accommodation. The team has found creative ways to engage with families using a variety of
methods and have developed positive relationships. We continue to support the highly specialised
clinics and liaise with professionals. We contribute to Education Health and Care Plans, social care
assessments, child in need meetings, safeguarding meetings and support families to request
specialist services in their local area. Care Coordinalors are carrying out home visits in person when
needed and engaging with families online and over the phone. We are facilitating peer to peer support
and online group sessions. Engagement with farnilies has increased further this year with the
introduction of our new Wellbeing Pilot Project.
In July 2023, we introduced the Wellbeing Pilot Project to explore the mental health and wellbeing
needs of the AS community. The pilot was delivered by Melissa Crowland who is a qualified Social
Worker and Humanistic Therapist. Melissa also has lived experience and has a diagnosis of AS. A
summary of the consultations and findings of this pilot study was presented to the ASUK Board of
Trustees in March 2024. The decision was made tD embed the project within the Family Support
Service from 1 st April 2024.
We continue to work in partnership with Bimiingham Women's and Children's Hospital IBWCHI and
the Queen Elizabeth Hospital, Bimingham (QEH) to deliver highly specialised mtjlti-disciplinary
clinics. B WCH have received additional funding this year to add an additional 2 virtual clinics per year
to help with capacity. ASUK Care Coordinators attend every AS clinic to offer support.
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Alstrom Syndrome UK
Trustees. Report
AS Highly Specialised Clinics during 2023-2024
Paediatrlc Clinics- Blmiingham Women's & Children's H05Pital
2 Virtual Clinics
4 In-Person Clinics IBWCHI
1 Outreach Clinic (St James's Hospital, Leeds)
Adult Clinics- Queen Elizabeth Hospital, Birmingham
6 In-Person Clinics
Additional Outpatient Appointments
3 young adults transferred from BWCH to QEH
During the year we received 4 new referrals aged 3, 12, 16 and 27 years. One person sadly passed
away, aged 23. We continue to support bereaved families and the AS community as best we can.
Losing a member of the AS community is devastating and impacts on everyone.
We continue to provide emotional and practical support and there has been a significant increase in
the demand on our services due to the cost-of-living crisis. We provide advice on benefits, provide
access to grants, contribute to education and social care assessments, and liaise be￿een individuals,
parents, carers, and local and specialist service providers.
Through our grants programmes we have been able to provide a range of different exercise
equipment and fund outdoor activities to support people to remain as active as possible. We have
also provided cost of living grants and equipment to support daily living. We have provided funding
through our Adult Empowerment grants for those over 18 years to visit new places of interest and to
challenge themselves to try new activities and develop independence. It ha5 been lovely to see
people venturing abroad again and taking part In new adventures. We continue to work with local
authorities and different charities to identify opportunities for families to access short breaks,
cost-of-living grants and emergency essential food and equipment.
In April 2023, we organised a residential weekend to Whitemoor Lakes, which was a huge success. 9
young people with AS attended with their parents, siblings and carers and were supported by ASUK
staff, trustees and volunteers. The weekend was packed full of fun and exciting things to do including
canoeing, abseiling, zip wire, challenge course, carnpfire, games, arts and crafts, plus birthday and
anniversary celebrations. We also had a visit from the animal man who brought along a range of
animals for families to meet and feel - including a life size interactive dinosaurl The activity wa5 mainly
funded through our Children in Need grant with additional funding allocated from general funds. A
residential weekend for young people under the age of 8 is planned for April 2024. A huge thank you
to Children in Need for providing funding that allows us to run residentials plus other activities, events
and exciting opportunities for young people such as driving a car and flying an aeroplanel
The ASUK Culture Family Forum continue to meet regularly online and invite guests to discuss
specific topics. This year they have interviewed our Chair of Trustees and following feedback, we
have introduced a new Trustees of the Future Training Programme that we plan to roll out in
September 2024. They have also provided advice and helped with the planning of the ASUK
conference which will take place in West Bromwich in October 2024. Members of the Culture Family
Forum and other young people, adults, parents and carers will have a much more active role in the
conference a5 they will be interviewing clinicians and researchers about the things that are important
to them.
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Alstrom Syndrome UK
Trustees. Report
We have been raising awareness of AS and sharing information about the condition and the support
we offer as an organisation. Information is shared through our ASUK and Breaking Down Barriers
(BDBI websites, newsletters, email circulations, over the telephone and via social media platforms.
We also take part in event5 throughout the rare disease community and sit on various committees and
steering groups. During the year we had 108.357 visits to the ASUK website with 67,083 unique
visitors. We reached 10,440 people on the ASUK Facebook page and had 24,594 impressions on X
(previously Twitter).
We continue to work internationally through AS Global. We have run 7 webinars throughout the year
for patients, parents, carers and professionals. Webinars are recorded and added to the ASUK
website with top tips and links to further information and resources. We held a virtual conference in
January 2024 which included 55 attendees from 16 countries. We provided 1 AS Lecture and 1 heart
series podcast. We have people from over 100 countries visiting the AS Global page each month.
The BDB ne￿Ork has now grown to over 70 organisations providing support to people affected by
rare and genetic conditions. We work together to learn, develop, and share good practice. Promoting
equity, diversity and inclusion is at the centre of what we do. Our Experts by Experience Advisory
Group help us to understand the lived experiences of people from diverse, marginalised and
underserved communities who are affected by rare and genetic conditions. We create safe spaces for
learning and collaboration, deliver training and run a community outreach proiect. We unite and strive
for equitable access to services and support for all. During the year we had 112,196 visits to the BDB
website with 3,537 unique visitors. We had 46,458 impressions on the BDB X account (previously
Twitter).
Following on from last year, we continued our partnership with the Department of Health & Social
Care to run another focus group to understand the health inequalities experienced by people from
diverse and marginalised communities who are also affected by a rare condition. Findings from these
focus groups are fed into England's Rare Diseases Action Plan that is published on Rare Disease
Day.
With the support of the BDB Experts by Experience Advisory Group and our youth and young adult
advisors, we updated T-KASH (Transition
Knowledge And Skills in Healthcare). We have created
brand new resources, including an animation that is being used throughout the BDB nelmork and
beyond. These resources were launched in September 2023, and we have received excellent
feedback. The T-KASH resource5 were originally created in 2015 by young people from the ASUK,
Hear My Voice Youth Forum. These free resource5 are designed to 5UPPOrt young people, families
and healthcare professionals, to help everyone understand the transitlon journey and the things that
are important to young people as they grow up. At the end of 2022, we began the process of updating
the T-KASH resources to ensure they are inclusive and represent the diverse needs of young people
within the rare disease community. A huge thank you to Contact and The Pears Foundation for
funding this work.
We have continued to wort( more broadly within the rare disease community, in the UK and beyond.
We recognise that as a small organisation, we are much stronger when working together with other
organisations. Embedding the diverse views of people with lived experience is essential in all that we
do.
Research
AS research is happening around the UK in pockets, including in Edinburgh, Bimiingham and at Keele
University. We will be asking researchers to provide an update at the ASUK conference in October
2024. We will 8150 request updates from members of the Medical and Scientific Advisory group.
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Alstrom Syndrome UK
Trustees. Report
There has been a significant investment in rare disease research, and we are pleased to be part of
various successful funding applications for research projects funded by LifeArc, the National Institute
for Health and Care Research, the Medical Research Council and Genomics England. We will be
supporting patient and public involvement and engagement for a centre to accelerate clinical trials for
people living with rare conditions, a project looking at clinical trial designs, the evaluation of The
Generation Study and the evaluation of the UK Rare Diseases Framework. In December 2023 we
were a150 successful with a bid to Genomics England to support them to develop a project on Equity
in Health Research.
Key Achlevements and Performance
During the year we..
Maintained our record of 100'/• attendance al clinics
Continued to work with the hospital teams to review and improve the clinics based on patient
needs, evaluation and feedback
Provided support and information to newly diagnosed individuals, families and the
professionals working with them
Facilitated online groups for young people and adults to meet and offer peer to peer support
Provided 21 small grants to empower people to exercise and develop independence and to
support with the cost of living
Provided 4 Adult Empowerment grants for adults to visit new places of interest or to try a new
activity
Provided virtual and face-to-face activities and events
Encouraged healthy lifestyles through information, support and global webinars
Increased the BDB Ne￿ork to over 70 organisations
Delivered Equity, Diversity and Inclusion training events for the BDB ne￿Ork
Developed new global connections and established partnerships
Encouraged worldwlde completion of the Patient Registry
Hosted a Global Alstrom Conference with SS attendees from 16 different countries bringing
together the Alstrom community from around the world
Attended the ASI conference in Baltimore, USA and collaborated with AS Intemational, Italy
and Germany to help deepen ties with AS organisations and people with lived experience
worldwide
Improved communications & increased our reach - the ASUK website had 108,357 views
Increased awareness and extended our reach using multimedia communication channels
Delivered 6 presentations about AS, ASUK and BDB - including presentations at the Medics
for Rare Diseases Communication and Inclusivity Conference and the Rare Disease
Research UK conference
Active engagement in successful rare disease research funding applications
Provided the secretariat for Alstrom Europe {ASEU)
Demonstrated effective cost control
Acted prudently and resourcefully to ensure we control expenditure and make the most of
income and donations
Supported the ASUK team
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Alstrom Syndrome UK
Trustees. Report
Future aims
The Board of ASUK is committed to contSnuing cur grants programme and to provide support,
activities, equipment and events for children, young people, adults, families and carers.
We are looking forward to bringing everyone together again at the ASUK conference in October 2024.
This will be the first in person conference since the pandemic. We will take the opportunity to share
information, listen to and learn from the AS community. We will use the information we gather to
develop our new strategy, making sure our work continues to be driven by the needs of people with
lived experience.
We are excited be part of new rare disease research initiatives and look forward to Seeing how each
project develops. Having an active role in rare disease research creates opportunities to further our
knowledge and hopefully improve health outcomes for people living with AS. BDB is helping us to
have more of an active role in research, make new connections and enabling us to forge new
collaborations.
We will continue to work collaboratively with the UK and international community through ASEU, AS
Global and BDB.
We will continue to strengthen our governance to have an effective and proactive Board.
We will invest 8nd care for our staff team and each other to develop skills, abilities and resilien￿.
Chalr's Revlew
The charity has had a successful year maintaining its financial sustainability and being involved in
ongoing support to the community and developing new projects.
We have recruited 1 new Trustee Tarek Hiwot. who compliments the Board members who provide a
diverse range of experience and knowledge to the charity. Melissa Crowland left the Board to become
a member of staff to lead our new health and wellbeing part of the charity.
We continue to offer both emotional and practical support to individuals and families. Including
support at hospital clinics, group sessions and small financial grants.
The BDB membership continues to grow and we are involved with training, research and patient and
public involvement.
Our engagement with research projects is increasing and we are able to offer our unique input and
knowledge to a variety of work.
Our amazing team of staff continue to provide an outstanding seNice and work together in a way that
puts the Alstrom community at the centre of everything they do.
We had a very successful global conference with representation from across the UK and many
countries aGfos5 the world
it was a great opportunity to share learning and knowledge. Our
programme of global webinars, liaison with the other AS organisations worldwide, and attendance at
international events has helped build and strengthen relationships across the global community.
The charity goes from strength to strength and I would like to take this opportunity to thank the Chief
Executive and all of the Board members for their tireless work and commitment to our community and
the team at ASUK who are a pleasure to work with.
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Alstrom Syndrome UK
Trustees, Report
Finally, may I say a heartfelt thank you to our community and supporters for your contribution., raising
funds and awareness of this ultra-rare condition that is Alstrom Syndrome.
Regards
Sharon Bates
Chair of the Board of Alstrtim Syndrome UK
Flnanclal Review
The General Fund had a surplus of £4,521 and stands at £202,10612023 £197,585).
The Trustees hold various designated and restricted funds, which are described in more detail in the
next section.
The Trustees made grants of £6,549 from the Financial Assistance Grant Fund and £2,000 from the
Adult Empowerment Grant Fund. The Trustees hold total designated funds of £45,84212023 £56,293)
The restricted funds stand at £43,611 {2023 £24,000).
Reserves Pollcy and Golng Concern
The Trustees review the level of reserves on a regular basis to maintain the appropriate levels after
considering the main risks to the organisation and future developments. The following designated
reserves are held at the year-end..
Financial Assistance Grant Fund £8,038 - Amount set aside to provide financial support to AS
patients, and their families based upon an assessment of need.
Adult Empowerment Grant Fund £15,618 - Amount set aside to enable and empower adults with AS,
to be used for a variety of activities that improve their ability to self-advocate, to meet up with other
adults and try something new. Funds may also be used to improve communication and confidence for
adults with AS.
Research Fund £20,000 - Amount set aside to fund research into AS.
Fixed Assets Fund £2,186
unless the assets are sold.
represent the fixed assets and cannot be used to fund expenditure
The remaining reserves of £202,106 are held in the General Fund.
The Trustees have reviewed the circumstances of the charity and consider that adequate resources
continue to be available to fund its activities for the foreseeable future. The Trustees are of the view
that the charity is a going concern.
Management of Risk
The Trustees have identified that the main risks to the charity are..
The loss of key personnel
The loss of the NHS England clinic contract
Failing to secure sufficient funds
The Trustees monitor and actively manage the risks through quarterly reports and regular updates
with staff.
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Alstrom Syndrome UK
Trustees, Report
Statement of trustees, responsibilities
The trustees (who are also the directors of Alstrom Syndrome UK for the purposes of company law}
are responsible for preparlng the trustees, report and the financial statements in accordance with
applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted
Accounting Practice), including FRS 102 The Financial Reporting Standard applicable in the UK and
Republic of Ireland The report and accounts have been prepared in accordance with the provisions
in the Companies Act 2006 relating to small companies.
Company law requires the trustees to prepare financial statements for each financial year. Under
company law the trustees must not approve the financial ststements unless they are satisfied that
they give a true and fair view of the state of affairs of the charitable company and of the incoming
resource5 and application of resources, including its income and expenditure, of the charitable
company for that period. In preparing these flnancial ststements, the trustees are requirecl to..
select suitable accounting policies and apply them consistently.,
observe the methods and principles in the Charities SORP;
make judgements and estimates that are reasonable and prudent;
stste whether applicable accounting standards, comprising FRS 102 have been followed, subject
to any material departures disclosed and explained in the financial statements,. and
prepare the financial statements on the going concern basis unless it is inappropriate to presume
that the charitable company will continue in business.
The trustees are responsible for keeping proper accounting records that can disclose with reasonable
accuracy at any time the financial position of the charitable company and enable them to ensure that
the financial statements comply with the Companies Act 2006. They are also responsible for
safeguarding the assets of the charitable company and hence for taking reasonable steps for the
prevention and detection of fraud and other irregularities.
The trustees are responsible for the maintenance and integrity of the corporate and financial
information included on the charitable company's website. Legislation governing the preparation and
dissemination of financial statements may differ frorn legislation in other jurisdictions.
Small companies provlslon statement
This report has been prepared in accordance with the small companies regime under the Companies
Act 2006.
The annual report was approved by the trustees of the charity on 4th December 2024 and signed on
its
Sharon Bates
Trustee
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Alstrom Syndrome UK
Independent Examiner's Report to the trustees of Alstrom Syndrome UK {'the
Company.)
I report to the charity trustees on my examination of the accounts of the Company for the year ended
31 March 2024.
Responslbllltles and basls of report
As the charity's trustees of the Company (and also its directors for the purposes of company law) you
are responsible for the preparation of the accounts in accordance with the requirements of the
Companies Act 2006 ('the 2006 Act,).
Having satisfied myself that the accounts of the Company are not required to be audited under Part
16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination
of your charity's accounts as carried out under section 145 of the Charities Act 2011 I'the 2011 Act'l.
In carrying out my examination I have followed the Directlons given by the Charity Commission under
section 145151{bl of the 2011 Act.
Independent examlner's statemgnt
Since the Company's gross income exceeded £250,000 your examiner must be a member of a body
listed in section 145 of the 2011 Act. I confirm that l am qualified to undertake the examination
because l am a member of ICAEW, which is one of the listed bodies.
I have completed my examination. I confirm that no matters have come to my attention in connection
wittt the examination giving me cause to belleve..
1. accounting records were not kept in respect of Alstrom Syndrome UK as required by section 386
of the 2006 Act; or
2. the accounts do not accord with those records; cr
3. the accounts do not comply with the accounting requirements of section 396 of the 2006 Act
other than any requirement that the accounts give a 'true and fair view, which Is not a matter
considered as part of an independent examination., or
4. the accounts have not been prepared in accordance with the methods and principles of the
Statement of Recommended Practice for accounting and reporting by charities applicable to
charities preparing their accounts in accordance with the Financial Reporting Standard
applicable in the UK and Republic of Ireland IFRS 1021.
I have no concerns and have come across no other matters in connection with the examination to
which attention should be drawn in this report in order to enable a proper understanding of the
accounts to be reached.
Catherine Williams FCA DChA
Westcott5 ISWI LLP
Independent Examiner
47 Boutport Street
Bamstaple
Devon
EX31 1SQ
Date..
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Alstrom Syndrome UK
Statement of Financial Activities for the Year Ended 31 March 2024
(Including Income and Expenditure Account and Statement of Total
Recognised Gains and Losses)
Unrestrictgd
funds
Restrlcted
funds
Total
2024
Total
2023
Note
Income and Endowments from:
Donations and legacies
Charitable activities
Investment income
3,976
202,563
2.627
3,976
348,063
2,627
3,712
366,290
766
145,500
Total income
209.166
145,500
354,666
370,768
Expenditure on:
Raising funds
Charitable activities
{2161
214,880
(216)
340,769
(2161
364,620
125,889
Total expenditure
215,096
125,889
340,985
364,836
Net {expenditure)/income
Net movement in funds
5,930
19,611
13,681
{5,930)
19,611
13,681
5,932
Reconclllatlon of funds
Total funds brought forward
Total funds carried forward 20
253,878
24.000
277,878
271,946
247,948
43,611
291,559
277,878
All of the charity's activities derive from continuing operations during the above periods.
The funds breakdown for 2023 is shown in note 20.
The notes on pages 13 to 24 form an integral part of these financial statements.
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Alstrom Syndrome UK
(Registration number: 3557191)
Balance Sheet as at 31 March 2024
2024
2023
Note
Flxed assets
Tangible assets
Current assets
Debtors
Investments
Cash at bank and in hand
14
2,186
4,088
15
16
17
42,071
85.000
194,981
322,052
38,613
85,000
171,612
295,225
Credltors: Amounts falllng due wlthin one year
Net currènt assets
18
32.679
21,435
289,373
273,790
Net assets
291,559
277.878
Funds of tho charlty:
Re8trlcted Income funds
Restricted funds
43,611
24,000
Unrestrlcted Income funds
Unrestricted funds
247,948
253,878
277,878
Total funds
20
291,559
For the financial year ending 31 March 2024 the charity was entitled to exemptlon from audlt under
section 477 of the Companies Act 2006 relating to small companies.
Directors, responsibilities..
The members have not required the charity to obtain an audit of its accounts for the year in
question in accordance with section 476., and
The directors acknowledge their responsibilities for complying with the requirements of the Act with
respect to accounting records and the preparation of accounts.
These financial statements have been prepared in accordance with the special provisions relating to
companies subject to the small companies regime within Part 15 of the Companies Act 2006.
The financial statements on pages 11 to 24 were approved by the trustees, and authorised for issue
on 4th December 2024 and signed on their behalf by..
Sharon Bates
Trustee
The notes on pages 13 to 24 forrn an integral part of these financial sL9tementS.
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Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
1 Charity status
The charity is limited by guarantee, incorporated in England & Wales, and consequently does not
have share capital. Each of the members is liable to contribute an amount not exceeding £10 towards
the assets of the charity in the event of liquidation.
The address of its registered office Is..
4 St Kitts Close
Torquay
Devon
TQ2 7GD
2 Accounting pollcle8
Summary of slgnlflcant accountlng pollcles and key accountlng estlmates
The principal accounting policies applied in the preparation of these financial statements are set out
below. These policies have been consistently applied to all the years presented, unless otherwise
stated.
Statement of complianc•
The financial statements have been prepared in accordance with Accounting and Reporting by
Charities.. Statement of Recommended Practice (applicable to charities preparing their accounts In
accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS
10211 (issued in October 20191- (Charities SORP {FRS 102)), the Financial Reporting Standard
applicable in the UK and Republic of Ireland {FRS 102) and the Companies Act 2006.
Basis of preparatlon
Alstrom Syndrome UK meet5 the definition of a public benefit entity under FRS 102. Assets and
liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the
relevant accounting policy notes. The financial statements are prepared in sterling which is the
functional currency of the charity.
Going concern
The trustees consider that there are no material uncertainties about the charity's ability to continue as
a going concern nor any significant areas of uncertainty that affect the carrying value of assets held by
the charity.
Exemptlon from preparing a cash flow statement
The charity opted to adopt Bulletin 1 published on 2 February 2016 and have therefore not included
cash flow statement in these financial statements.
Income and endowments
All income is recognised once the charity has entitlement to the income, it 15 probable that the income
will be received and the amount of the income receivable can be measured reliably.
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Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
Donations and legacies
Donations are recognised when the charity has been notified in writing of both the amount and
settlement date. In the event that 2 donation is subject to conditions that require a level of
performance by the charity before the charity is entitled to the funds, the income is deferred and not
recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly
within the control of the charity and it is probable that these conditions will be fulfilled in the reporting
period.
Investment income
Dividends are recognised once the dividend has been declared and notification has been received of
the dividend due.
Expendlture
All expenditure is recognised once there is a legal or constructive obligation to that expenditure. it IS
probable settlement is required and the amount can be measured reliably. All costs are allocated to
the applicable expenditure heading that aggregate similar costs to that category. Where costs cannot
be directly attributed to particular headings they have been allocated on a ba515 conslstent with the
use of resources, with central staff costs allocated on the basis of time spent, and depreciation
charges allocated on the portion of the asset's use. Other support costs are allocated based on the
spread of staff costs.
Ralslng funds
These are costs Sncurred in attracting voluntary income, the management of investments and those
incurred in trading activities that raise funds.
Charitable actlvlties
Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities
and services for its beneficiaries. It includes both costs that can be allocated directly to such activities
and those costs of an indirect nature necessary to support them.
Support costs
Support costs include central functions and have been allocated to activity cost categories on a basis
consistent with the use of resources, for example, allocating property costs by floor areas, or per
capita, staff costs by the time spent and other costs by their usage.
Tanglble flxed assets
Individual fixed assets costing £250 or more are initially recorded at cost, less any subsequent
accumulated depreciation and subsequent accumulated impairment losses.
Depreciation and amortlsatlon
Depreciation is provided on tangible fixed assets SD as to write off the cost or valuation, less any
estimated residual value, over their expected useful economic life as follows:
Asset class
Computer Equipment
Depreciation method and rate
250/0 Straight line
Page 14

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
Current assei Investments
Current asset investments are included at the lower of cost and net realisable value I market value.
Cash and cash equivalents
Cash and cash equivalents comprise cash on hand and call dep051ts, and other short-term highly
liquid investments that are readily convertible to a known amount of cash and are subject to an
insignificant risk of change in value.
Fund structure
Unrestricted income funds are general funds that are available for use at the trustees discretion in
furtherance of the objectlV8s of the charity.
Designated funds are unrestricted funds earmarked by the trustees for particular future projects or
commitments.
Restricted income funds are those donated for use in a particular area or for specific purposes, the
use of which is restricted to that area or purpose.
Flnancial instruments
Classlficatlon
Financial assets and financial liabilities are recognised when the charity becomes a party to the
contractual provisions of the instrument.
Financial liabilities and equity instruments are classified according to the substance of the contractual
arrangements entered into. An equity instrument is any contract that evidences a residual interest in
the assets of the charity after deducting all of its liabilitie5.
Recognition and measurement
All financial assets and liabilities are initially measured at transaction price (including transaction
costs), except for those financial assets classified as at fair value through profit or loss, which are
initially measured at fair value (which is normally the transaction price excluding transaction costs),
unless the arrangement constitutes a financing transaction. If an arrangement constitutes a financing
transaction, the financial asset or financial liability is measured at the present value of the future
payments discounted at a market rate of interest for a similar debt instrument.
Financial assets and liabilities are only offset in the statement of financial position when, and only
when there exists a legally enforceable right to set off the recognised amounts and the charity intends
either to settle on a net basis, or to realise the asset and settle the liability simultaneously.
Financial assets are derecognised when and only when a} the contractual rights to the cash flows
from the financial asset expire or are settled, bl the charity transfers to another paty substantially all
of the risks and rewards of ownership of the financial asset, or cl the charity, despite having retained
some, but not all, significant risks and rewards of ownership, has transferred control of the asset to
another party.
Financial liabilities are derecognised only when the Dbligation specified in the contract is discharged,
Cancelled or expires.
Page 15

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
3 Income from donations and legacies
Unrestrlcted
funds
Total
2024
Donations
General Donations
3,976
3,976
Unrestrlcted
lunds
Total
2023
Donations
General Donations
3,712
3,712
4 Income from charltable actlvltles
Unrestrlctod
funds
Restrlcted
fund8
Total
2024
Unrestricted Grants
Transition Activities
Breaking Down Barriers
Pears
NHS Commissioning
Sundry income
8,000
8,000
24,000
113,000
8,500
180,089
14,474
348,063
24,000
113,000
8,500
180,089
14,474
202,563
145,500
Unrestrlcted
funds
Restrlcted
funds
Total
2023
Unrestricted Grants
Transition Activities
Breaking Down Barriers
Pears
NHS Commissioning
Sundry income
10,000
10,000
22,900
132,415
8,500
171,061
21,414
366,290
22,900
132,415
8,500
171,061
21,414
202,475
163,815
Page16

Alstrom Syndrome UK
Notes to the Financial Ststements for the Year Ended 31 March 2024
S Investment income
Unrestricted
funds
Total
2024
Bank interest receivable
2,627
2,627
Unrestricted
funds
Total
2023
Bank interest rec8ivabl&
766
766
6 Expendlture on ralslng funds
Unrestrlcted
funds
General
Total
2024
Costs of ralslng donatlons and legacles
Administration costs
216
216
Unrestrlctod
funds
General
Total
2023
Costs of ralslng donatlons and legacies
Administration costs
216
216
7 Expenditure on charltable actlvltles
Unrestrfcted
funds
Restrlctod
funds
Total
2024
NHS Commissioning
Transition Activities
Breaking Down Barriers
Pears
Financial Assistance Grant Fund
Adult Empowerment Grant fund
Fixed assets
Support costs
146,539
146,539
19,089
100,660
6,140
6,549
2,000
1,902
57,890
340,769
19,089
100,660
6,140
6,549
2,000
1,902
57,890
214,880
125,889
Page 17

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
Unrestricted
funds
Restricted
funds
Total
2023
NHS Commissioning
Transition Activities
Breaking Down Barriers
Pears
Family Support
Financial Assistance Grant Fund
Adult Empowerment Grant fund
Fixed assets
Support costs
138,072
138,072
26,114
122,683
7,940
3,054
4,990
1,000
1,944
58,823
26,114
122,683
7,940
3,054
4,990
1,000
1,944
58,823
204,829
159,791
364,620
8 Analysis of support costs
Support costs allocated to charltable actlvltle¥
Support
costs
Total
2024
Total
2023
Staff costs
Membership fees
Sundry expenses
Telephone
Insurance
Accountancy fees
Contractors fees
Hotels, travelling and subsistence costs
Printing, postage, stationery and advertising
Conferences
30,083
605
8,747
385
1,203
1,251
6,435
1,543
71
7,567
57,890
30,083
605
8,747
385
1,203
1,251
6,435
1,543
71
7,567
43,275
334
2,669
984
909
1,164
5,990
1,774
624
1,100
58,823
57,890
Page18

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
9 Net incomingloutgoing resources
Net incoming resource5 for the year include..
2024
2023
Depreciation of office equipment
1,902
1,944
10 Trustees remuneration and expense8
No trustees, nor any persons connected with them, have received any remuneration from the charity
during the year.
During the year, Trustees claimed out of pocket expenses relating to travel and accommodation to
attend Trustee meetings, conference and project costs these claims totalled £7,721 (2023 £1,037).
Costs have increased 2024 due to a trustee attending the ASI Conference in the USA and expenses
connected with the Wellbeing Project.
11 Staff costs
The aggregate payroll costs were as follows..
2024
2023
Staff costs durlng the year were:
Wages and salaries
Social security costs
Pension costs
Other staff costs
202,101
13,489
10,195
4,416
206,107
14,574
9,432
4,093
230,201
234,206
The average head count of employees during the year was 8 (2023". 8). The average number of
full-time equivalent employees during the year is analy5ed as follows..
2024
No
2023
No
Staff
No employee received emoluments of more than £60,000 during the year.
Page 19

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
12 Independent examination fees
2024
2023
Independent examination of the financial ststements
Other ServI￿S
2,502
2,328
2,000
2,502
4,328
13 Taxatlon
The chan'ty is a registered charity and is therefore exempt from taxation.
14 Tangible flxed assets
Computer
equipment
Cost
At 1 April 2023
13,012
At 31 March 2024
Depreclatlon
At 1 April 2023
Charge for the year
At 31 March 2024
8,924
1,902
10,826
Net book value
At 31 March 2024
2,186
At 31 March 2023
4,088
Page 20

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
15 Debtors
2024
2023
Trade debtors
Prepayments
18,507
23,564
21,150
17,463
42,071
38,613
16 Current asset Investments
2024
2023
Deposits
85,000
85,000
17 Cash and cash equlvalonts
2024
2023
Cash at bank
194,981
171,612
18 Creditors: amounts falllng due wlthln one year
2024
2023
Trade creditors
Other tsxation and social security
Accruals
7.765
14,170
10,744
541
13,241
7,653
32,679
21,435
19 Penslon and other Schemes
Deflned contribution pension schome
The amount recognised in income or expenditure as an expense in relation to defined contribution
plans was £10,195 (2023: £9,432).
Page 21

Alstrom Syndrome UK
Note5 to the Financial Statements for the Year Ended 31 March 2024
20 Funds
Balance at
Balance at
31 March
2024
Incoming
resources
Resources
expended
2023
Unrestrlcted funds
General Funds
Financial Assistance Grant Fund
Adult Empowerment Grant Fund
Fixed Assets
Research Fund
197,585
14,587
17,618
4,088
20,000
209,166
(204,645)
16,5491
(2,0001
11,902)
202,106
8,038
15,618
2,186
20,000
253,878
209,166
215,096
247,948
Restricted funds
Children in Need
Breaking Down Barriers
Pears
2,755
20,685
560
24,000
113,000
8,500
145,500
{19,0891
{100,660)
6,140
125,889
7,666
33,025
2,920
24,000
43,611
Total funds
277,878
354,668
340,985
291,559
Balance at
1 Aprll
2022
Balance at
31 March
2023
Incomlng
resources
Resources
expended
Unrestrlcted fund8
General Funds
Financial Assistance Grant Fund
Adult Empowemient Grant Fund
Fixed Assets
Research Fund
187,743
19,577
18,618
6,032
20,ODO
206,953
(197,1111
{4,990)
{1,000)
{1,944)
197,585
14.587
17,618
4,088
20,000
251,970
206,953
205,045
253,878
Restrlcted funds
Children in Neect
Breaking Down Barriers
Smaller Restricted Funds
Pears
5,969
10,953
3,054
22,900
132,415
(26,1141
(120,447)
13,054)
7,940
2,755
22,921
8,500
560
19,976
163,815
157,555
26,236
Total funds
271,946
370,768
362,600
280,114
Page 22

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
Unrestricted Funds
General Fund
General funds are donations and other incoming r6sotJrces receivable or generated for the objects of
the charity without further specific purpose and which the charity may use for its purpose at its
discretion.
Financial Assistance Grant Fund
Amount set aside to provide financial support to Alstrom patients and their families based upon an
assessment of need.
Adult Empowerment Grant Fund
Amount set aside to enable and empower adults with Alstrom to be used for a variety of activities that
improve their ability to self-advocate and to meet up with other adult5. Funds May also be used to
improve comrnunication and confidence for adults with Alstrom.
Fixed Assets
Fixed Assets which cannot be used to fund expenditure without being sold.
Research Fund
Wording for Research Fund -Amount set aside to fund research into Alstrom Syndrorne.
Restrlcted Funds
Children In Need
Funding towards a Transitions Coordinator, support groups for young people and activities,
Breaking down Barriers
Funding to facilitate patient organisations and support groups to join together to share examples of
good practice and develop new guidelines to highlight effective ways to support families.
Pears
Enabling our team to meet the unprecedented, increasing demand on our support services.
21 Analys18 of net asset8 bètween funds
Unrestrlcted
funds
General
Total funds
at 31 March
2024
Restrlcted
funds
Tangible fixed assets
Current assets
Current liabilities
2,186
267,774
22,012
2,186
322,052
32,679
54,278
10,667
Total net assets
247,948
43,611
291,559
Page 23

Alstrom Syndrome UK
Notes to the Financial Statements for the Year Ended 31 March 2024
Unrestricted
funds
General
Total funds
at 31 March
2023
Restricted
funds
Tangible fixed assets
Current assets
Current liabilities
4,088
265,454
15,664
4,088
295,225
21,435
29,771
5,771
Total net assets
253,878
24,000
277,878
22 Related party transactlons
There were no related paty transactions in the year.
Page 24