TSA Blog

  • 'Oh, MRI Scan' by Joel Yearby

    'I wrote this after my ultrasound - it's a rough draft,' writes Joel, who has recently been diagnosed with TSC. Oh MRI scan here we are, soon meet up again for I remember the noise you make, as you do what you do for here we are again to check on my tumors that grows inside of me. For this time the tumors seems to be blocking the view of my kidneys, for I know we have to be checked on with tuberous sclerosis ever so often to keep an eye on my tumors, to decide on whether I n.. ...more

  • #TSA40stories 'Pay It Forward'

    Tom Stafford is father to Polly, seven and Evie, 10. He is also Deputy Sales Manager of Softcat. Polly has TSC and here Tom explains why he does what he does for the TSA. When you have a kid that you can't fix – the helplessness of me not being able to fix my daughter Polly – that's what drives me to do what I do, Polly is now seven and a half and for the past five years I have done something every year – including running, Ride London to Surrey bik.. ...more

  • #TSA40stories - Ann Hunt, MBE, Guardian Obituary

    This is the Guardian Obituary of TSA founding member Ann Hunt, MBE, published in June 2014 Ann Hunt, who has died aged 75, was instrumental in stimulating research into genetic conditions, as an active researcher herself and by promoting, facilitating and supporting others. In particular she had a profound impact on the international path towards finding a cure for the rare genetic condition tuberous sclerosis complex (http://www.tsalliance.org/pages.. ...more

  • #TSA40stories - 'Moved by the challenges of TSC'

    I first became involved with the TSA in the late 1980s, writes Patrick Bolton, Professor of Child and Adolescent Psychiatry, King's College London. Ann Hunt’s work showed that there was a high rate of autism connected to TSC and I was interested to find out why. When I took up a senior lectureship in Cambridge in the early 1990s, I linked up with John Yates to study TSC more systematically. I have always been hugely impressed by the TSA and its commitment to su.. ...more