Welcome to our first eNews for 2025. In this issue we encourage you to register for our Zoom event on everolimus and sirolimus and read the latest research on how seizures influence brain development in young children with TSC. We'd also love your help with raising awareness of TSC.

Jackie Gambrell, CEO, TSA

New Zoom event on everolimus and sirolimus

Many people living with TSC are now prescribed everolimus or sirolimus, which are the mTOR inhibitor treatments. Over the past decade or so, these treatments have had life-changing impacts for many people living with TSC.

We invite you to this Zoom Information Event on 7 May in which Dr Clara Chung (Clinical Geneticist) and Dr Denise Chan (Paediatric Neurologist) from Sydney Children's Hospital will help us understand more about these important medications.

Let's celebrate!

When is your loved one living with TSC celebrating their birthday? Or is there another milestone you'd like to share?

Send us a photo, along with their name, birthdate and age (if you want to share this) and any other details you’d like to share and we’ll share a celebration message on TSA social media.

Email [email protected]

New research on seizures in young children living with TSC and the impact on developmental outcomes

This study explored how seizures influence brain development in young children with TSC (Tuberous Sclerosis Complex). It compared the cumulative seizure burden—the total number and severity of seizures experienced over time—and the age of seizure onset in predicting developmental outcomes by age 3.

Read the Research

Will you help raise awareness of TSC?

This year TSC Global Awareness Day is on Thursday15 May. If you would be happy to get involved in helping to raise awareness of TSC by creating a light up event - eg putting some lights in your doorway or stringing up some fairy lights in your garden, then please get in touch with Amy by emailing [email protected]

Thank you for your support

Thank you to everyone who donated to our end of year appeal. Together you raised just over $4,000 to help people living with TSC in Australia. A big thanks once again to Olivia (pictured) and her family for sharing their story as part of the appeal.

Vale Professor Allan Glanville

Our condolences go out to the family and friends of Professor Allan Glanville who sadly passed away on 22 December 2024. Professor Glanville, an expert respiratory physician, was well-known and respected within the TSC LAM Community. He was extraordinarily knowledgeable, approachable and very generous with his time. Professor Glanville was based at St Vincent’s Hospital for many years and more recently at Macquarie University Hospital in Sydney, NSW.

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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