Tickets are now on sale for Sydney’s first Comedy for a Cure. We hope you will join us for a night where we will harness the power of laughter to raise critically needed funds to help people affected by a rare and devastating disease called Tuberous Sclerosis Complex (TSC). Comedy for a Cure will feature a fantastic line up of comedians with Peter Berner headlining the show
Dr Kate Riney and the team at Queensland Children’s Hospital are currently recruiting patients for a formal phase II/III trial of topical rapamycin (sirolimus) for facial angiofibromas. Patients, aged 6 to 65 years, need to be treatment naïve (ie have … Read More
One of the largest international scientific research programs on epilepsy has reached its end. The EPISTOP project proved that preventive treatment decreased the risk and severity of epilepsy. The results of the EPISTOP research will be used to develop a … Read More
A recently published study from the global EPISTOP study suggests that we can use developmental assessments of babies as young as six months old to predict which will go on to be diagnosed with autism spectrum disorder (ASD).
This study helps us understand epilepsy in people with tuberous sclerosis complex (TSC) by analysing the experiences of 1852 people with both TSC and epilepsy involved in the TOSCA project.
We are pleased to share news that everolimus (Afinitor) for epilepsy has been added to Australia’s pharmaceutical benefits scheme (PBS). Today the Federal Health Minister, the Honourable Greg Hunt announced that this medicine to treat seizures for people with TSC … Read More
Dr Bec Mitchell continues her valuable work on the DOTS* study that is increasing our knowledge of the risk factors for autism in children with TSC and of possible interventions for children at risk of autism. Dr Mitchell is a … Read More
We are pleased to share news that Everolimus (Afinitor) for epilepsy has been given a positive recommendation by the pharmaceutical benefits advisory committee (PBAC). This is a recommendation to the Federal Health Minister to add this medicine to the pharmaceutical … Read More
Today we celebrate the academic publication of results from the Treatment trial. This research developed a topical cream to treat the small tumours that grow on the face of people with tuberous sclerosis. While these tumours, called angiofibromas, do … Read More
Invitation to TSC families in NSW and ACT to participate in this focus group study.