Overall GiG Score: 12 ?
Finance Score: 1
Governance Score: 6
Support Score: 5
  • Reasonable growth: +1
  • No PartB
  • Good trustee age range: +3
  • Dynamic board: +3
  • Grant maker support: +5

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
  • There have been no material income shortfalls in recent years
  • A significant proportion of recent income was derived from major grant makers including the Government
  • 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
Established: 26 years

www.alstrom.org.uk

steve.scoffield@alstrom.org.uk

07980122404

Charity Commission for England and WalesCompanies HouseFacebookX
UN SDGs
?

Financial Data ?

Income & Spending ?
Sources of Income ?
Y/E Income
£k
Spending
£k
Surplus/
Deficit
Fundraising
Cost £k
Total
Funds £k
Unrestricted
Funds £k
Mths
Rsrvs
Staff Volun-
teers
31/03/23£371£365£6n/an/an/an/an/a5
31/03/22£300£303£-3n/an/an/an/an/a5
31/03/21£375£232£143n/an/an/an/an/a5
31/03/20£257£301£-44n/an/an/an/an/a5
31/03/19£249£239£10n/an/an/an/an/a5
31/03/18£193£244£-51£0£0£0n/a00
31/03/17£205£200£5£0£0£0n/a00
31/03/16£203£167£36£0£0£0n/a00
31/03/15£192£187£6£0£0£0n/a00
31/03/14£270£310£-40£0£0£0n/a00
31/03/13£345£354£-9£0£0£0n/a00
31/03/12£348£346£2£0£0£0n/a00
31/03/11£319£248£70£0£0£0n/a00
31/03/10£214£172£42£0£0£0n/a00
31/03/09£155£123£31£0£0£0n/a00
31/03/08£141£109£32£0£0£0n/a00
31/03/07*£98£92£6£0£0£0n/a00
31/03/06£51£56£-5£0£0£0n/a00
31/03/05£70£60£10£0£0£0n/a00
31/03/04£55£68£-13£0£0£0n/a00

Highest pay bracket: less than £60,000
What it does
  • Disability
  • Education/Training
  • General Charitable Purposes
  • The Advancement Of Health Or Saving Of Lives
Who works here?
  • 5 volunteers
Who it helps
  • Children/Young People
  • 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's supporting them? ?

Donations from Grant Makers ?

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

Major supporters in last 5 years
BBC Children in Need£92,570
National Lottery Community Fund£63,494
Sport England£10,000
The Fore£5,000
Specific Donations
Amount When
Months
To be used for
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 ....more
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 ....more
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 ....more
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 ....more
The Fore - RAFT COVID-19 response grant to Alstrom Syndrome UK
£5,000 03/06/2020
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 ....more
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 ....more
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 ....more
Show more rows

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (8)
Current Trustees appointed
Gender Split
Based on 7/8 persons

Age Range of Trustees: 21-66
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

Charity Commission for England and Wales
360 Giving
CharityBase
Authorised officials of this charity can add information to this page (including a Donate Now button) for no cost

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