Finance Score: 0

Governance Score: -1

Support Score: 2

No PartB

Mainly female board: -1

Overall weighted support: +2

Overall GiG Score: 1

TIMOTHY SYNDROME ALLIANCE (TSA)

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.

Analysis by Giving is Great

Positives:

A significant proportion of recent income was derived from major grant makers

Regulatory & Governance issues to consider:

The Board is predominantly female

Financial issues to consider:

A PartB annual return has not been required and so detailed financial information is not available from the online data

Financial Data ?

Income & Spending ?

Sources of Income ?

Y/E	Income	Spending	Surplus/ Deficit	Volun- teers
30/11/23	£21	£12	£9	n/a
30/11/22	£10	£5	£5	n/a
30/11/21	£6	£3	£3	n/a
30/11/20	£2	£0	£2	n/a

Show financials table -->

Download accounts

Highest pay bracket: less than £60,000

Established: 5 years

www.timothysyndrome.org

sophie@timothysyndrome.org

07941881340

Charity Commission for England and Wales

Tweets

Listed activities

Education/Training

GiG Classification

Services for people with disabilities

How it operates

Provides advocacy/advice/information
Sponsors or undertakes research

Where it operates

Australia, Brazil, Canada, China, Dubai, Egypt, France, Germany, Hong Kong, Israel, Italy, Malaysia, Mexico, Netherlands, New Zealand, Norway, Poland, Scotland, Spain, Sweden, Switzerland, Throughout England And Wales, Turkey, United Arab Emirates, United States,

Who it helps

People With Disabilities
The General Public/Mankind

Who supports them? ?

Donations from Grant Makers ?

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

Specific Donations

Amount	When Months	To be used for
Postcode Local Trust - Project Funding
£9,636	30/06/2023	Funding mental health counselling programmes to help families affected by our complex rare disease cope with the psychological challenges.

Data sourced from Donors via 360 Giving

How is it governed?

Trustees (7)

Current Trustees appointed

Gender Split

Based on 6/7 persons

CLIN. GENET RESEARCHER KATHERINE TIMOTHY Appointed: 2020

GALINA GARDINER Appointed: 2019

GEMMA DUNCAN Appointed: 2024

MEG MCLAUGHLIN Appointed: 2019

NICHOLAS MUIR Appointed: 2019

SOPHIE MUIR (Chair) Appointed: 2019

SUSAN BRESNAHAN Appointed: 2024

Legal constitution

Charity registered in England & Wales on 27/09/2019, number: 1185523

Gift Aid

Registered with HMRC for Gift Aid

Policies in force

Complaints handling
Complaints policy and procedures
Conflicting interests
Financial reserves policy and procedures
Internal charity financial controls policy and procedures
Risk management
Safeguarding policy and procedures
Trustee conflicts of interest policy and procedures
Trustee expenses policy and procedures

Filing Record

4 returns made; all on time

Main office

8 Butt Street
Minchinhampton
Stroud
GL6 9JP

Objectives

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.

Data Sources

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