Tom Carter

Our dedication – and absolute way of life – for the last 40 years. A story that runs for chapters and is seriously hard to summarise. But here goes...

You will see from Anne's story that she (we) have been an integral part of the Association’s ‘very being’ since its inception.

Our involvement with the TSA commenced in November 1978 when I first joined the Association’s Board. I have been delighted to serve continuously for the last 39 years as Chair of Trustees (1987-1992), President of the Association (1992-2012) and since 2012 as Honorary Life Vice President.

I have been actively involved in all aspects of the Association’s affairs and meritorious growth – witnessing the advances in understanding of the condition from the first search for the genes implicated through to present day knowledge and, more recently, the advancement of drug, and other, therapies.

The journey has been astounding and I have met with so many wonderful families who, though facing the traumas of coping with the vagaries of Tuberous Sclerosis Complex and the difficult pathway of life that has been served them, have always had an excess of smiles and laughter!!
I was joint organiser of International TS Research Symposia in 1982, 1985, 1988 & 1991.
Along with Anne, we were instrumental in establishing TSI (Tuberous Sclerosis Complex International) and still maintain considerable involvement since its inauguration in 1986.
Similarly, in 1992 we were instrumental in establishing TSE (Tuberous Sclerosis Europe) which I Chaired until 2012. I continue to be a Member Board of Directors of ETSC (European Tuberous Sclerosis Complex Association).
I am a Member of TSA Finance Committee and more latterly I am a Consultant to the Scientific Advisory Board of the TOSCA Project representing worldwide Patient Groups.