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. Some funding for interstate travel is available, making this trial available for eligible … Read More
The aim of this study was to assess the efficacy and safety of treatment of an mTOR inhibitor in children under 2 years of age. Seventeen children who received early treatment with an mTOR inhibitor were included. The children had … Read More
While most paediatricians and child neurologists have become good at identifying and treating the physical manifestations of TSC, it remains difficult to identify and treat the neuropsychiatric issues commonly associated with TSC. Why the TAND checklist was developed In 2012, the … Read More
Up to 90% of patients with TSC have epilepsy and in over half of those, seizure control cannot be achieved by regular antiepileptic drugs. This is commonly known as uncontrolled, refractory, intractable, or drug-resistant epilepsy. Everolimus and sirolimus are both mTOR-inhibiting drugs … Read More
Tuberous Sclerosis Australia (TSA) is delighted to announce that Dr Fiona McKenzie, Geneticist at the King Edward Memorial Hospital for Women in Subiaco, Western Australia, is the winner of the 2019 Elizabeth Pinkerton Memorial Award. This award is given annually by TSA to a health professional in … Read More
We are very excited to announce that Kim Kerin-Ayres will be joining TSA as our new telehealth nurse.
GW Pharmaceuticals has announced positive top-line results of a Phase 3 clinical trial of EPIDIOLEX® (cannabidiol or CBD) CV in the treatment of seizures associated with Tuberous Sclerosis Complex (TSC). This is exciting news and a step further along the … Read More
The Elizabeth Pinkerton Memorial award is given annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts to improve the lives of TSC affected people and their families in Australia. Elizabeth (Lizzie) Pinkerton (1984 – 2010) had … Read More
It was announced today that TSA is one of 11 patient organisations that will receive funding support for a part-time telehealth nurse under the Patient Pathways program developed by the Centre for Community-Driven Research (CCDR). This pilot project is intended … Read More
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