TSA Blog

  • SCAN Mental Health and Wellbeing - Lottie and Ed's story

    Lottie’s story Freddie Norton-Usher is now a very lively 2 and a half year old, but a little over a year ago the Norton-Usher family’s world was turned upside down. ‘Freddie was absolutely fine, completely normal, until one day when, out of the blue, he went limp, completely floppy for about 30 – 40 seconds. We did not know what was going on. It was terrifying and we thought Freddie had died.’ In that instant Lottie and partner Ed’s world change for ever. An ambulance ride.. ...more

  • Medical writer Corinne Swainger joins Rescom

    Freelance medical writer Corinne Swainger is the most recent addition to Rescom, the TSA’s committee that oversees investment in research for both treatment and a cure for TSC. As well as more than 20 years working in pharmaceutical-healthcare communications, Corinne has an intimate knowledge of TSC, having been diagnosed at the age of 28. “As a teenager, I had a few TSC symptoms but no idea about what they meant. These included some red skin on one side of my face, which looke.. ...more

  • #Fight4Treatment - The clock is ticking on the lives of TSC patients

    Jayne Spink, CEO of the Tuberous Sclerosis Association, writes about the impact of delays in patients’ access to treatments for tuberous sclerosis complex, highlighting some of the problems with the current system for commissioning medicines in England. Tuberous sclerosis complex (TSC) is a rare genetic condition estimated to affect one million people worldwide. It can lead to tumours on vital organs – most commonly the brain, heart, kidney, skin and lungs. Whilst the impact of TSC.. ...more

  • The Reality of an Individual Funding Route (IFR) application for Everolimus

    Case study – The Price family Dylan Price, 7, has Tuberous Sclerosis Complex and two brain tumours (SEGAs) which are growing and will prove fatal without treatment. Dylan, as well as the SEGA growths, also suffers with epilepsy. Despite this he has developed into a wonderful, sociable, happy little boy who attends mainstream school. He has received Everolimus since March 2016, funded by NHS England through an Individual Funding Request (IFR). This is due to be reviewed ev.. ...more