# TIMOTHY SYNDROME ALLIANCE (TSA)

## Details

- **Country:** England & Wales
- **Charity number:** 1185523
- **Other names:** TIMOTHY SYNDROME ALLIANCE, TSA
- **Status:** Registered
- **Legal form:** CIO
- **Registered:** Sept. 27, 2019
- **Register:** https://register-of-charities.charitycommission.gov.uk/en/charity-search/?p_p_id=uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet&p_p_lifecycle=0&p_p_state=maximized&p_p_mode=view&_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1185523


## Contact

- **Address:** 8 Butt Street, Minchinhampton, Stroud
- **Postcode:** GL6 9JP
- **Phone:** 07941881340
- **Email:** sophie@timothysyndrome.org
- **Website:** www.timothysyndrome.org



## Activities

**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.

**Activities:** 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.




## Classification

- **How:** Provides Services, Provides Advocacy/advice/information, Sponsors Or Undertakes Research
- **What:** The Advancement Of Health Or Saving Of Lives, Disability
- **Who:** Children/young People, People With Disabilities



## Areas of operation

- Throughout England



## Finances

| Period end | Income | Expenditure | Assets | Employees |
|---|---|---|---|---|
| Nov. 30, 2025 | £205304 | £128996 | — | — |
| Nov. 30, 2024 | £93687 | £19756 | — | — |
| Nov. 30, 2023 | £21405 | £12305 | — | — |
| Nov. 30, 2022 | £10005 | £4706 | — | — |
| Nov. 30, 2021 | £6084 | £3226 | — | — |



## Trustees

- **SOPHIE MUIR** (Chair) — appointed Sept. 27, 2019
- Achsah James — appointed Nov. 6, 2024
- Dr Christine Ziegler — appointed Sept. 10, 2025
- Galina Gardiner — appointed Sept. 27, 2019
- Gemma Duncan — appointed March 11, 2024
- Glenn Miller — appointed Sept. 10, 2025
- Meg McLaughlin — appointed Sept. 27, 2019
- Nicholas Muir — appointed Sept. 27, 2019
- Susan Bresnahan — appointed June 11, 2024