TIMOTHY SYNDROME ALLIANCE (TSA)

Charity Number: 1185523
Charity reporting is up to date (on time)

Charity overview

Activities - how the charity spends its money

TIMOTHY SYNDROME ALLIANCE (TSA) IS A WORLDWIDE PATIENT GROUP ORGANISATION WHICH HELPS AND SUPPORTS INDIVIDUALS WITH CACNA1C-RELATED DISORDERS, INCLUDING TIMOTHY SYNDROME AND LONGQT8, AND THEIR FAMILIES/CARERS. WE RAISE AWARENESS TO DRIVE RESEARCH AND CLINICAL DEVELOPMENT TO ENHANCE SCIENTIFIC UNDERSTANDING TO FIND A CURE.

Income and expenditure

Data for financial year ending 30 November 2024

Total income: £93,687
Total expenditure: £19,756

People

7 Trustee(s)

4 Volunteer(s)

Employees with total benefits over £60,000

No information available

Fundraising

No information available

Trading

This charity does not have any trading subsidiaries.

Trustee payments

No trustees receive any remuneration, payments or benefits from the charity.

What, who, how, where

What the charity does:
  • The Advancement Of Health Or Saving Of Lives
  • Disability
Who the charity helps:
  • Children/young People
  • People With Disabilities
How the charity helps:
  • Provides Services
  • Provides Advocacy/advice/information
  • Sponsors Or Undertakes Research
Where the charity operates:
  • Throughout England And Wales
  • Australia
  • Brazil
  • Canada
  • China
  • Dubai
  • Egypt
  • France
  • Germany
  • Hong Kong
  • Israel
  • Italy
  • Malaysia
  • Mexico
  • Netherlands
  • New Zealand
  • Norway
  • Poland
  • Scotland
  • Spain
  • Sweden
  • Switzerland
  • Turkey
  • United Arab Emirates
  • United States

Governance

Registration history:
  • 27 September 2019: CIO registration
Organisation type:
CIO
Other names:
  • TIMOTHY SYNDROME ALLIANCE (Working name)
  • TSA (Working name)
Gift aid:
Recognised by HMRC for gift aid
Other regulators:
No information available
Policies:
  • 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
  • Risk management
  • Safeguarding policy and procedures
  • Trustee conflicts of interest policy and procedures
  • Trustee expenses policy and procedures
Land and property:
This charity does not own and/or lease land or property

Trustees

Trustees are the people responsible for controlling the work, management and administration of the charity on behalf of its beneficiaries. Generally trustees are treasurer, chair, board member etc. The trustees are responsible for keeping this list up to date and can do this by updating their details as they happen through the online service

7 Trustee(s)

Name Role Date of appointment Other trusteeships Reporting status of other trusteeships
SOPHIE MUIR Chair 27 September 2019
None on record
Achsah James Trustee 06 November 2024
None on record
Susan Bresnahan Trustee 11 June 2024
None on record
Gemma Duncan Trustee 11 March 2024
None on record
Meg McLaughlin Trustee 27 September 2019
None on record
Galina Gardiner Trustee 27 September 2019
None on record
Nicholas Muir Trustee 27 September 2019
None on record

Financial history

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Financial period end date

Income / Expenditure 30/11/2020 30/11/2021 30/11/2022 30/11/2023 30/11/2024
Total gross income £1.90k £6.08k £10.01k £21.41k £93.69k
Total expenditure £47 £3.23k £4.71k £12.31k £19.76k
Income from government contracts N/A N/A N/A N/A N/A
Income from government grants N/A N/A N/A N/A N/A

Accounts and annual returns

This table shows the charity's record of submitting annual returns, accounts and trustees' annual report (TAR) for the last five financial periods.
Title Reporting year Date received Received Download
Annual return 30 November 2024 09 May 2025 On Time
Accounts and TAR 30 November 2024 09 May 2025 On Time Download Open in new window
Annual return 30 November 2023 11 July 2024 On Time
Accounts and TAR 30 November 2023 11 July 2024 On Time Download Open in new window
Annual return 30 November 2022 21 April 2023 On Time
Accounts and TAR 30 November 2022 26 April 2023 On Time Download Open in new window
Annual return 30 November 2021 17 March 2022 On Time
Accounts and TAR 30 November 2021 13 July 2022 On Time Download Open in new window
Annual return 30 November 2020 09 March 2021 On Time
Accounts and TAR 30 November 2020 09 March 2021 On Time Download Open in new window
Submit annual return Open in new window

Governing document

Details of the type of governing document the charity has and when it was established.
It is not the full text of the charity's governing document.

CIO - FOUNDATION Registered 27 Sep 2019 as amended on 11 Mar 2024

Charitable objects

THE OBJECTS OF THE CIO ARE TO RELIEVE THE NEEDS OF THOSE AFFECTED BY DELETERIOUS CACNA1C GENE CHANGES RESULTING IN CACNA1C-RELATED DISORDERS INCLUDING TIMOTHY SYNDROME AND LONG QT8, THEIR FAMILIES AND CARERS WORLDWIDE IN PARTICULAR BUT NOT EXCLUSIVELY BY:- (1) PROMOTING GREATER UNDERSTANDING OF THE CAUSES, SYMPTOMS AND TREATMENT OF CACNA1C-RELATED DISORDERS INCLUDING TIMOTHY SYNDROME AND LONG QT8, BY THE PROMOTION OF RESEARCH AND SHARING AND DISSEMINATING OF THE RESULTS OF SUCH RESEARCH FOR THE BENEFIT OF THE GENERAL PUBLIC; (2) RAISING PUBLIC AWARENESS OF THE SYMPTOMS, NEEDS AND RELATED MEDICAL CONDITIONS OF THOSE LIVING WITH CACNA1C-RELATED DISORDERS INCLUDING TIMOTHY SYNDROME AND LONG QT8.

Contact information

Address:
8 Butt Street
Minchinhampton
Stroud
GL6 9JP
Phone:
07941881340
Email:
sophie@timothysyndrome.org
Website:

www.timothysyndrome.org Open in new window