Finance Score: 6

Governance Score: 6

Support Score: 7

Reasonable growth: +1
Future income +5
No PartB

Good trustee age range: +3
Dynamic board: +3

Overall weighted support: +7

Overall GiG Score: 19

ALSTROM SYNDROME UK

Alstrom Syndrome UK provides information, family support and advice for individuals affected, their families, carers and professionals. We work closely with Birmingham Children's Hospital & Torbay Hospital to support the multi-disciplinary clinics for Alstrom patients. We raise money for research. We endeavour to raise awareness of Alstrom Syndrome. We provide a 24 hour answer-machine help-line.

Analysis by Giving is Great

Positives:

There has been reasonable growth in spending over the last 3 years relative to the previous period
A significant proportion of recent income was derived from major grant makers including the Government and there are significant future grants due to be received
The Board appears to be well diversified in terms of age and dynamic in terms of composition

Regulatory & Governance issues to consider:

Over half the Board have joined recently

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E		Income £k	Spending £k	Surplus/ Deficit £k	Fundraising Cost £k	Total Funds £k	Unrestricted Funds £k	Mths Rsrvs	Staff	Volun- teers
31/03/23		£371	£365	£6	n/a	n/a	n/a	n/a	n/a	n/a
31/03/22		£300	£303	£-3	n/a	n/a	n/a	n/a	n/a	n/a
31/03/21		£375	£232	£143	n/a	n/a	n/a	n/a	n/a	n/a
31/03/20		£257	£301	£-44	n/a	n/a	n/a	n/a	n/a	n/a
31/03/19		£249	£239	£10	n/a	n/a	n/a	n/a	n/a	n/a
31/03/18		£193	£244	£-51	n/a	n/a	n/a	n/a	n/a	n/a
31/03/17		£205	£200	£5	n/a	n/a	n/a	n/a	n/a	n/a
31/03/16		£203	£167	£36	n/a	n/a	n/a	n/a	n/a	n/a
31/03/15		£192	£187	£6	n/a	n/a	n/a	n/a	n/a	n/a
31/03/14		£270	£310	£-40	n/a	n/a	n/a	n/a	n/a	n/a
31/03/13		£345	£354	£-9	n/a	n/a	n/a	n/a	n/a	n/a
31/03/12		£348	£346	£2	n/a	n/a	n/a	n/a	n/a	n/a
31/03/11		£319	£248	£70	n/a	n/a	n/a	n/a	n/a	n/a
31/03/10		£214	£172	£42	n/a	n/a	n/a	n/a	n/a	n/a
31/03/09		£155	£123	£31	n/a	n/a	n/a	n/a	n/a	n/a
31/03/08		£141	£109	£32	n/a	n/a	n/a	n/a	n/a	n/a
31/03/07	*	£98	£92	£6	n/a	n/a	n/a	n/a	n/a	n/a
31/03/06		£51	£56	£-5	n/a	n/a	n/a	n/a	n/a	n/a
31/03/05		£70	£60	£10	n/a	n/a	n/a	n/a	n/a	n/a
31/03/04		£55	£68	£-13	n/a	n/a	n/a	n/a	n/a	n/a

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Highest pay bracket: less than £60,000

Established: 26 years

www.alstrom.org.uk

steve.scoffield@alstrom.org.uk

07980122404

Charity Commission for England and Wales

Tweets

Listed activities

Disability
Education/Training
General Charitable Purposes
The Advancement Of Health Or Saving Of Lives

GiG Classification

Services for people with disabilities

How it operates

Provides advocacy/advice/information
Provides buildings/facilities/open space
Provides human resources
Provides services
Sponsors or undertakes research

Where it operates

Throughout England And Wales,

Who it helps

Children/Young People
People With Disabilities

Who supports them? ?

Donations from Grant Makers ?

We have details on the following donations. Multi-year donations are allocated to the years for which they are earmarked.

Major supporters in last 5 years

The Aim Foundation	£340,000
BBC Children in Need	£93,070
National Lottery Community Fund	£63,494
Sport England	£10,000
The Fore	£5,000

Specific Donations

Amount	When Months	To be used for
The Aim Foundation - Grant to Alstrom Syndrome UK
£340,000	19/04/2023 36	Breaking Down Barriers - Understanding genetics together
BBC Children in Need - Grant to Alstrom Syndrome UK (ASUK)
£500	20/10/2022 0	‘Cost of Living uplift: £500 to help projects meet their rising costs and respond to increased demand 31/10/2022’
BBC Children in Need - Grant to Alstrom Syndrome UK (ASUK)
£73,000	10/08/2021	This project will deliver a range of activities and an annual residential to children and young people with Alstrom Syndrome. The activities will result in reduced isolation, improved healthy lifestyles and improved decision making.
BBC Children in Need - Grant to Alstrom Syndrome UK
£16,570	30/11/2020	This project will deliver webinars and storytelling to children and young people across the UK with Alstrom Syndrome, further impacted by Covid-19. Outcomes include reduced isolation, improved confidence and improved sense of empowerment.
National Lottery Community Fund - Breaking Down Barriers Covid 19 Crisis Management
£63,494	08/07/2020 12	The funding will be used to upskill a national network of patient organisations to help vulnerable and disadvantaged families access specialist services. The project is a patient-led organisation which supports those affected by a rare genetic ....more The funding will be used to upskill a national network of patient organisations to help vulnerable and disadvantaged families access specialist services. The project is a patient-led organisation which supports those affected by a rare genetic condition which may involve retinal degeneration Nystagmus Photophobia Sensorineural Hearing Loss obesity and insulin resistance.
BBC Children in Need - Grant to Alstrom Syndrome UK
£3,000	17/06/2020 6	COVID19 - This grant is for the development of a health and wellbeing e-book and supporting information for children with Alstrom Syndrome impacted by the Covid-19 pandemic. The aim is to improve physical health.
The Fore - RAFT COVID-19 response grant to Alstrom Syndrome UK
£5,000	03/06/2020 36	Grant from The Fore's RAFT Immediate Response Fund to Alstrom Syndrome UK, as part of The Fore's COVID-19 Response programme.
Sport England - COVID-19 CEF
£10,000	15/05/2020 4	Funding under Sport England's COVID-19 Community Emergency Fund funding programme for a Revenue project titled COVID-19 CEF. This project is a Sport participation and capacity building project, with a focus on beneficiaries with a disability.
BBC Children in Need - Grant to Alstrom Syndrome UK
£61,750	27/06/2018 36	This project will work with young people affected by Alstrom Syndrome. By providing fun activities and one to one support with transition, the organisation will ensure the young people are less isolated, healthier and able to better manage change.
Sport England - Sports Buddies Project
£9,740	28/03/2014	Funding under Sport England's Small Grants funding programme for a Revenue project titled 'Sports Buddies Project'. This project is a Cycling project, with a focus on beneficiaries with a disability.
National Lottery Community Fund - Ciliopathy Alliance UK
£10,000	23/09/2010 12	This is a project by a community group in Paignton, Devon. The group will use the funding for a sessional worker to coordinate a range of country wide events and initiatives for the Ciliopathy Alliance, an alliance of support groups for people ....more This is a project by a community group in Paignton, Devon. The group will use the funding for a sessional worker to coordinate a range of country wide events and initiatives for the Ciliopathy Alliance, an alliance of support groups for people living with rare genetic conditions. This will ultimately provide support for patients and raise awareness.

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Data sourced from Donors via 360 Giving

How is it governed?

Trustees (9)

Current Trustees appointed

Age Range of Trustees: 22-66

ALEXANDRA RAYSON LINE Appointed: 2024, Occupation: Director

CAROL PRESCOTT Appointed: 2022, Occupation: Habilitation Officer

HARIS HAMID Appointed: 2022, Occupation: Worker Rnib

JANE ELIZABETH BIGLIN Appointed: 2022, Occupation: Retired

MATHILDE VICTORIA YATES Appointed: 2022, Occupation: Retired

PROF. TIMOTHY BARRETT Appointed: 2019, Occupation: Consultant Paediatric Endocrinology And Diabetes

SHARON BATES (Chair) Appointed: 2019, Occupation: Practice Manager

TREVOR PARKIN Appointed: 2023, Occupation: None

TAREKEGN HIWOT Appointed: 2023, Occupation: Doctor

Legal constitution

Charitable company registered in England & Wales on 25/08/1998, number: 1071196
Registered at Companies House on 01/05/1998, number: 03557191

Gift Aid

NOT registered with HMRC for Gift Aid

Policies in force

Bullying and harassment policy and procedures
Complaints handling
Complaints policy and procedures
Conflicting interests
Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Internal risk management policy and procedures
Investing charity funds policy and procedures
Investment
Paying staff
Risk management
Safeguarding policy and procedures
Safeguarding vulnerable beneficiaries
Serious incident reporting policy and procedures
Social media policy and procedures
Trustee conflicts of interest policy and procedures
Trustee expenses policy and procedures
Volunteer management

Filing Record

20 returns made; AR07: 37 days late,

Main office

The Rectory
Barnstaple Hill
Swimbridge
BARNSTAPLE
Devon
EX32 0PH

Objectives

THE RELIEF OF SICKNESS OF PERSONS WITH ALSTROM SYNDROME IN PARTICULAR BUT NOT EXCLUSIVELY BY THE PROVISION OF SUPPORT, ADVICE AND INFORMATION FOR SUCH PERSONS THEIR FAMILIES, CARERS AND THOSE WORKING WITH AFFECTED INDIVIDUALS.THE PROMOTION OF RESEARCH INTO ALSTROM SYNDROME AND RELATED SYNDROMES BOTH IN THE UK AND ABROAD AND THE PUBLIC DISSEMINATION OF THE USEFUL RESULTS THEREOF.

Defined Area of Benefit:

NOT DEFINED

Data Sources

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