A Novartis Phase III clinical trial has shown that Everolimus significantly controls seizures in TSC patients when taken in addition to the patients' usual anti-epileptic drugs (AEDs). The results of the EXIST-3 (epilepsy) study were presented to a meeting of the American Academy of Neurology
A massive #VLM2016 thank you to our five fantastic @LondonMarathon runners Dan Morbin, David Donovan, Hollie Light, Ken Welby and Mark Holland - who have – between them – raised a whopping  £11,261.68p for us. Their totals, to date, stand at: Dan: £2508 David: £213.75
Our new Tea & SCones for TSC 2016 video, starring the wonderful Collins family (Jessica, Josh, Oska, Ollie, and mum and dad, Victoria and Dale, as pictured below) from Cardiff, is now on our YouTube channel! Please click here to watch it. And if you are
Fundraiser, David Cropper, is running 110 miles for the TSA. Friend to the Dale family, David has decided to run for their son Sam, who has TSC. He is running to support our #Fight4Treatment campaign and has already raised over £1000. Nick Dale, former Trustee
Genetic Alliance UK are currently conducting the 'Hidden Costs' study - a study which is testing the feasibility of researching the costs associated with managing rare conditions. The research team are looking for volunteers to test a 'patient diary' over a period of 2-3 weeks.
Researchers at Cardiff University are pleased to confirm that they will be opening a centre in Glasgow in June 2016 to aid recruitment to the TRON study. This may be of interest to our community in Scotland and Northern England that may have found it
We are delighted to announce that NHS England have released the prescribing policy for the treatment of angiomyolipomas (AMLs) in patients with Tuberous Sclerosis Complex. Please find the policy statement at the bottom of this NHS England page: www.england.nhs.uk/comissioning/spec-services/npc-crg/group-b/b03 You can download the document here
NEWSFLASH... Six places to take part in this September's Great North Run are still available to runners from across the UK who would like to complete this iconic event and help raise funds to fight TSC. With only a week to go before registration closes
Are you under 16 years old and either have TSC or have someone in your family with TSC? Then why not grab your art gear, get creative and enter our Christmas card design competition? If you win, not only will you feature in our Christmas
NHS England devastating U-turn on drug treatment for brain tumours Last year NHS England promised to develop an in year policy for the use of Everolimus to treat SEGA (brain TSC related tumours). This month, NHS England broke that promise and is saying this drug
