TSA Blog

  • Our recent visit to the TS Alliance Office in the USA by Sheila Cook

    In June 2018, Sheila Cook, whose granddaughter Mia has TSC, had the opportunity to visit the TS Alliance Office in Silver Springs, Maryland, USA. Here Sheila, from Stockport, recounts her visit and the international friendships she has forged over the years. Later this month Sheila will be attending the TS Alliance World Conference in Dallas in 2018. Other community members attending are Carole Hagan and Annemarie Cotton. Clare Kassa, Head of Support &Information Services will .. ...more

  • SCAN Research - The Next Generation of TSC Researchers and Drugs interview with Kacper Rogala

    The next generation of TSC researchers and drugs. Dr Kacper Rogala has been recently awarded a Fellowship Award from the TSA to work on the project ‘Towards specific mTORC1 inhibitors capable of rescuing TSC loss-of-function’. We caught up with him to find out more about how his career has led to him being involved in TSC research, the work he plans to undertake and what makes him tick outside of the laboratory. Please describe your acad.. ...more

  • SCAN Sleep Special - Jo Dale 'We don't get much sleep!'

    We don’t get much sleep, says Jo Dale, mum of 10-year-old Sam, who has TSC. It’s variable. Sometimes Sam will sleep for two or three hours at a stretch and then be up for the rest of the night. Other times his sleep will be more broken than that. But most days he will wake and be up then for the day any time between 3am and 5am. Sometimes when he comes home from school he is so exhausted that he is asleep by 4.30pm and he needs it. There is no keeping.. ...more

  • SCAN Sleep Special - Jackie Murray 'I've cut down on chips!'

    I was diagnosed with TSC at the age of 12. I’ve had it since birth, but it took until then for me to be diagnosed. I really struggle with numbers and simple maths especially division and multiplication. I also suffer from social anxiety and find it difficult to adjust in certain situations. I’ve never had any seizures. But I do have lesions on my skin, especially on my forehead, on my legs and arms. They’re not very noticeable and I don’t get peop.. ...more