Neurodevelopmental disorders in children with TSC (Video)
Neurodevelopmental disorders in children with TSC
Reach Out, October 2020
The October 2020 edition of Reach Out is now available to read online. This issue’s theme is Telehealth.
Final Zoom Education Events for 2020
TSA is offering two further zoom education events this year. These online events are free to TSA members (click here to sign up now if you are not currently a member) but you MUST REGISTER. Neurodevelopmental disorders in TSC children … Read More
Notice of TSA’s Annual General Meeting 2020 and proposed changes to the TSA Constitution
TSA’s AGM All members are invited to attend the Annual General Meeting (AGM) of Tuberous Sclerosis Australia Inc. which, in accordance with Fair Trading NSW COVID-19 guidelines, will be held via zoom on Sunday 11 October at 3pm. If you … Read More
September Zoom Education Events
TSA is offering two zoom education events in September. These online events are free to TSA members (click here to sign up now if you are not currently a member). But, you MUST REGISTER as places are strictly limited. Events are … Read More
Reach Out survey outcomes
Thank you to everyone who took part in our Reach Out survey earlier this year. Encouragingly, most people said they read the magazine from cover to cover and that they find the content always interesting and relevant. Readers rated Personal Stories, Research News and TSC Information as the most relevant and interesting content. So, please keep sharing your personal stories with us!
Multidisciplinary model of care for TSC adults in France
About this study This study reports on 90 adults with TSC who attended Centre Hospitalier Universitaire de Bordeaux, between January 2000 and September 2018. Since 2015 this institution has been providing a multidisciplinary team approach to the care of adults with TSC. It does this through … Read More
Improving developmental abilities in infants with TSC
This is a report on a small pilot study of an evidence-based, parent-mediated behavioral intervention focused on improving early social communication and play skills in five children with TSC, aged 1–3 years. Background This team’s previous study published in 2014, found that infants with TSC demonstrated early delays in nonverbal cognition and … Read More
What do you think of telehealth?
We know that during pandemic, many of you have had face-to-face medical appointments switched to telehealth (phone or video) appointments. We’d like to hear about your experiences of this – good and bad. If you are happy to share your … Read More
Using mTOR inhibitors to treat renal angiomyolipomas (AMLs) in children with TSC
Kidney health is a serious concern for many people living with TSC. Renal cysts and angiomyolipomas (AMLs) often develop. These can obliterate healthy renal tissue and cause bleeding as they grow, leading to chronic kidney disease or devastating bleeding complications. Approximately … Read More