The academic journal, Annals of Neurology, has recently accepted a paper by researchers at Texas Children’s Hospital, Baylor College of Medicine and Cincinnati Children’s Hospital. This small study shows promising results in a small number of TSC patients being treated … Read More
Clare Stuart, ATSS Project Manager, recently attended the 2013 International Research Conference on Tuberous Sclerosis Complex and Related Disorders. Hosted by the TS Alliance, this conference was themed “Molecules to Medicines”. Clare’s travel was sponsored by TSC International. It is … Read More
The first ever treatment specifically for Tuberous Sclerosis Complex (TSC) has recently been recommended for inclusion on the pharmaceutical benefits scheme (PBS), making it accessible to those living with the impacts of this devastating disease. One of the difficult to … Read More
The TS Alliance has provided this recording of a recent research webinar. It covers the changes to the diagnostic criteria that were agreed at the recent clinical consensus conference held in Washington DC. If you are interested in how diagnostic … Read More
Everolimus is an mTOR inhibitor medicine and may be an effective treatment for some people with Subpendymal Giant Cell Astrocytomas (SEGAs) caused by Tuberous Sclerosis (TSC). Everolimus is marketed by Novartis under the brand name Afinitor. In November 2012 the … Read More
Are you a parent or caregiver to a child with Tuberous Sclerosis? The University of Newcastle, University of Tel Aviv, Duke University, and the Children’s Hospital of Philadelphia are interested in your experiences regarding the diagnosis of your child. We … Read More
Efficacy and safety of everolimus for subependymal giant cell astrocytomas associated with tuberous sclerosis complex (EXIST-1): a multicentre, randomised, placebo-controlled phase 3 trial (Online release) Released online this week, the EXIST-1 team have published long term safety data of the … Read More
Information from the clinical trials team at Sydney Children’s Hospital for families interested in participating in research into the topical use of rapamycin to treat angiofibromas.
Three years of fundraising has led to Sydney Children’s Hospital being funded by ATSS to take part in the first randomized controlled trial for the topical use of Rapamycin for angiofibromas, the skin condition that affects up to 90% of people with Tuberous Sclerosis Complex. Thank you to the hundreds of people that organized fundraising activities and donated. Over $200,000 was raised; however, the average donation was under $100.