TIMOTHY SYNDROME ALLIANCE (TSA)

Registered charity 1185523 · accounts filings on the Charity Commission register · also known as TIMOTHY SYNDROME ALLIANCE, TSA

Timothy Syndrome Alliance (TSA) supports individuals with CACNA1C-Related Disorders, including Timothy Syndrome and Long QT8, and their families/carers. From the UK, we provide guidance, information, and advocacy to families worldwide, raise awareness, and promote research and clinical development to improve understanding, care, and treatment.

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.

The charity’s charitable objects and area of benefit, quoted from its governing document as held on the Charity Commission register.

Causes: The Advancement Of Health Or Saving Of Lives · Disability · website · Get email alerts

Financial health, per its FY2025 accounts

The accounts state that total income for the year was £205,304, with the majority being restricted funding. Free reserves stood at £8,150, which is below the charity's stated policy target of £9,000 to £10,000. The trustees consider the charity to be a going concern with adequate resources for the foreseeable future.

Automated summary of the FY2025 accounts; the evidenced findings below carry the verbatim passages.

What the accounts disclose

Accounts independently examined (not a full audit). Discloses 5 of 6 completeness components.

Policies the charity declares

In its annual return the charity told the Commission that it has the policies listed below. This is self-declared: it is not verified by the Commission or by this site, and it is not evidence of how a policy works in practice.

• 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

Public fundraising profile: JustGiving — Timothy Syndrome Alliance (TSA) (matched by registered charity number).

Funders the charity credits

Named as funders/supporters on the charity’s own website (the charity’s claim, distinct from accounts-verified grants).

• Chan Zuckerberg Initiative — “In October 2024, Timothy Syndrome Alliance became one of the first international patient organisations to join the Chan Zuckerberg Initiativ…” (source page)

Public profiles (found on the charity’s own website): facebook · instagram

Trustees · trustee networks

• SOPHIE MUIRchair
• Achsah James
• Dr Christine Ziegler
• Galina Gardiner
• Gemma Duncan
• Glenn Miller
• Meg McLaughlin
• Nicholas Muir
• Susan Bresnahan

Trustee list from the Charity Commission register (current, not historical).

Operates in: Throughout England

Income and spending

Common questions

Known funders

Grants to this charity found in funders’ own accounts filings.

Government & lottery funding

Grants to this charity published as open data by government and lottery funders (360Giving).

Funders of similar charities

Funders whose accounts show grants to charities similar to this one (and no recorded grant to this charity) — a starting list for fundraisers.

Charities like this

Semantically similar by activities and financial character, from our analysed corpus. Compare with THE TUBEROUS SCLEROSIS ASSOCIATION.

• THE TUBEROUS SCLEROSIS ASSOCIATION income £478k
• TOURETTE SYNDROME (UK) ASSOCIATION TRADING AS TOURETTES ACTION income £599k
• CURE AND ACTION FOR TAY-SACHS (CATS) FOUNDATION income £131k
• TURNER SYNDROME SUPPORT SOCIETY income £220k
• UNITED KINGDOM THALASSAEMIA SOCIETY income £173k
• GENETIC ALLIANCE UK LTD income £886k

Side by side with its peers

Each row is that charity’s latest analysed filing; every value is quote-backed on its own page.