It is with great sadness that we announce to the TSA community the death of Ann Hunt MBE. 

Ann came into the world of TSC when her youngest son, James, born in 1971, was diagnosed with the TSC.  At the time, very little was known about the disorder and almost nothing was known about the learning and behavioural issues associated with TSC.  In 1977 Ann co-founded the TSA,  driven by her passion to find ways to meet her son’s needs and to increase support and understanding for others.

Not only did Ann carry out and facilitate research, she also supported hundreds of TSC families directly through telephone and direct contact.  Ann was a generous mentor to young researchers in TSC and a great support to all those around her.  Through direct involvement of Ann and the TSA, the European TSC consortium identified the TSC2 gene in 1993. Ann organised three international research conferences in the UK, she chaired the Behaviour Panel at the 1998 Annapolis meeting, and co-organised two cognition and behaviour meetings, one in Cambridge (1999) and one in Cincinnati (2001). She was also the main driver behind the meeting of the International Behaviour Consensus Panel that led to the consensus clinical guidelines for the assessment of cognitive and behavioural problems in TSC, published in 2005. 

Ann retired from the TSA in 2006 but there is no doubt that her lifelong passion, energy and drive has had a profound impact on the international path towards finding a cure for TSC. There is also no doubt that, directly and indirectly, she has made an enormous contribution to improve the lives of all those affected.

Ann Hunt’s Guardian Obituary is now available to view online – click here

The family have said that for those that wish to attend the funeral the details are:

Thursday 17th July, 11.15am

Oxford Crematorium
Bayswater Road