Welcome to our eNews for October 2024. This week is National Carers Week and tonight we are pleased to host a free Zoom event about Carer Gateway, a free and national program designed to help people in caring roles. We hope to see you there - you can register using the button below.

Best wishes to you all, Jackie Gambrell, CEO, TSA

Carers Week Zoom Event Tonight

Where can carers get help and support?

As a carer it can be hard asking for help or difficult even to know where to turn to for support. On Tuesday 15 October, Julie Jones will tell us about Carer Gateway, a free, national program which exists to help people in caring roles find and access free and essential supports such as counselling, peer support and respite.

Have You Given Us Your Views?

Thank you to everyone who has already completed our TSA Survey 2024. This is a great opportunity to help us direct our activities and resources. If you have not already done so, please take 5 minutes to fill out the survey today. We really want and appreciate your feedback and input.

Fill Out the Survey

TSC-related Skin Issues

Four in five people with TSC have skin issues, and they can be very challenging. In this Zoom Education Event, expert dermatologist Associate Professor Deshan Sebaratnam will discuss TSC-related skin issues - symptoms, diagnosis, treatment and management.

Join us on Tues 19 November to find out more.

Cannabidiol (CBD) Research

We recently published a summary of a study looked at the long-term effects and safety of using Cannabidiol (CBD) as an additional treatment for patients with TSC who have epilepsy that is hard to control with standard treatments. The researchers monitored changes in seizure frequency and occurrence of side effects over a period of about 3 years.

Cannabidiol Trial in NSW and ACT

We are excited to let you know about the BEYOND Clinical Trial, a study exploring the effects of Cannabidiol (Epidyolex®) on seizure outcomes in children and adults living with TSC which is currently recruiting 20 participants in NSW and Canberra. Rural and remote patients can participate as it is administered from home, with no need for hospital visits.

Find Out More

In Safe Hands

If your child living with TSC is starting or tansitioning schools in 2025, you may like to read our In Safe Hands resource which helps you identify ways to make sure your child feels adequately supported to do well at school and reach both their academic and social potential. In Safe Hands can provide you with useful suggestions for how to get the best help and interventions to ensure your child’s needs are met.

For more...

To find out more about what we're currently working on, please click here.

To catch up on other recent news including research and events, please click here.

TSA is here for you

If you or a loved one need information or support about any aspect of living with TSC please connect with Katrina, the TSA Nurse. This is a free and confidential service.

Call 1300 733 435 (Australia only)

Email [email protected]

You can also find the latest TSC information at tsa.org.au

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