# TIMOTHY SYNDROME ALLIANCE (TSA)

## Details

- **Country:** England &amp; 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&amp;p_p_lifecycle=0&amp;p_p_state=maximized&amp;p_p_mode=view&amp;_uk_gov_ccew_onereg_charitydetails_web_portlet_CharityDetailsPortlet_regId=1185523


## Contact

- **Address:** 8 Butt Street, Minchinhampton, Stroud
- **Postcode:** GL6 9JP
- **Phone:** 07941 881340
- **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



## Geography

- Throughout England





## Trustees

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




