About The Tuberous Sclerosis Association

The TSA is a registered charity compliant with all areas of charity law.

Launched in 1977 with a membership of 50 families and funds of £25, the Tuberous Sclerosis Association (TSA) has grown from a round robin support letter, to a professional organization providing support to families affected by TS across the UK. 

The TSA has 3 main objectives:

  • To support individuals affected by TSC, together with their families or carers.
  • To encourage and support research into the causes and management of TSC.
  • To provide education and information.
The TSA has a new five year strategy to REACH more people and drive more REseArCH.  The strategy covers the period 2019-2023.

Our vision is a world where TSC and its effects are conquered.                                                                                                                                        
Our mission is to provide help for today and a cure for tomorrow.

Our aims (what we will do) are to:

  • Make a positive impact on the health and wellbeing of people living with TSC and their families and carers
  • Lead research into tools, technologies and treatments which eliminate the effects of TSC
  • Lead innovation in the integration of medical and social care services
Our objectives (how we will do it) are to:

1. Provide good quality, easily accessible and timely information about TSC and about living with the condition

2. Provide the opportunity for people with TSC and their families to connect, support and learn together

3. Capacity build the knowledge and expertise of professionals working with people with TSC

4. Drive the research agenda with the aim of improving outcomes and quality of life for people with TSC

5. Expand our understanding of the condition to accelerate diagnosis, intervention and development of new treatments

6. Disseminate and use evidence to influence NHS policy and practice

7. Campaign for better access to treatments and care from the NHS

8. Support the development of centres of excellence for supporting people with TSC and their families

9. Pilot, then roll out, innovative approaches to whole person, family and carer support



Our enablers (the things that will make it possible) to deliver the strategy are:


  • Effective teamwork by staff working together to achieve a shared vision
  • High quality, integrated financial management
  • Digital transformation and smart working to reach more people
  • An enterprising approach to income generation to drive more research
Our values (the things we believe are important) are to be inclusive, ambitious and effective.


 

Trustees

TSA Trustees have a personal connection with Tuberous Sclerosis Complex. Many of them are parents of children with TSC or individuals with TSC. If you would more information about the Board of Trustees or are interested in getting involved please contact the Chairman.

Presidents:

Christine Naylor 
 

Hon Life Vice Presidents:

Esther Galbraith
Tom Carter
Anne Carter
Christine Naylor 

Trustee Officers:

Chairman – Martin Short
Deputy Chair - vacant
Treasurer and Company Secretary - Rob Vaughan 
 

Other Trustees:

Dr  Chris Kingswood - Head of Research Strategy 
Lisa Suchet 
Patrick Bolton 
Philip Goldenburg
Robert Woodthorpe Brown

 

Committees

The following committees are made up of Trustees and other members of the association. If you would like to be more involved in the work of the TSA then becoming a member of a committee is a good way to start. Contact us for more information. 
 

Finance Committee:

Martin Short, Tom Carter, Philip Goldenberg, Rob Vaughan.
 

Research Committee (RESCOM):

Prof. Alex Blakemore, John Blay, Jeannie Blay, Prof. Petrus de Vries, Dr Frances Elmslie, Dr Eric Finlay, Dr Danny Gale, Carole Hagan, Laura Hughes, Perry James, Dr Anna Jansen, Prof Simon Johnson, Dr Larissa Kerecuk, Dr Chris Kingswood (Acting Chair), Emma McManus, Dr Emily Osterweil, Corinne Swainger, Prof. Ben Whalley.


Company Information:

Tuberous Sclerosis Association company information is available from the Companies House website. 

Our registered address is CAN Mezzanine, 32-36 Loman Street, London, SE1 0EH 
 

Charity Registration:

England and Wales No. 2900107 English Registered Charity Number. 1039549   l   Scottish Registered Charity No. SC042780