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.

Our Mission: To provide care for today and hope for tomorrow


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 - Philip Goldenberg
Treasurer and Company Secretary - Rob Vaughan



Other Trustees:

Martin Balfour-Allen
Dr  Chris Kingswood - Head of Research Strategy
Sophie Lording
Lisa Suchet
Jean Wilson
Patrick Bolton
Isabel Divanna



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:

Tom Carter, Philip Goldenberg, Dr Chris Kingswood, Christine Naylor, Rob Vaughan.

Research Committee (RESCOM):

Prof. Alex Blakemore, John Blay, Jeannie Blay, Paula Davis, Nick Davis, Prof. Petrus de Vries, Dr Frances Elmslie, Catherine Falconer, Dr Eric Finlay, Dr Danny Gale, Carole Hagan, Perry James, Dr Anna Jansen, 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