Welcome to our eNews for November 2024. In this bumper issue we are delighted to let you know about:

Our new resource for GPs
A free Zoom event on TSC-related skin issues
A new research trial open to people living in remote and regional areas of NSW and ACT

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

New Resource for GPs

We are delighted to launch our new resource for GPs and other clinicians. We hope it will increase the understanding of care considerations for patients with TSC across the lifespan and help enable effective care coordination between primary care clinicians and specialists. The resource is available at https://tsa.org.au/managingtsc and a PDF version can be downloaded from this page.

Please share this resource with your GP and other clinicians who may benefit from the information.

Go to the Resource

TSC-related Skin Issues

Four in five people with TSC will have skin issues. In this Zoom Education Event, expert dermatologist Associate Professor Deshan Sebaratnam will discuss the symptoms, diagnosis, treatment and management of TSC-related skin issues and answer your questions.

Join us on Tues 19 November to find out more.

Have You Given Us Your Views?

If you have not already done so, we urge you to please take 5 minutes to fill out the TSA 2024 survey today. This feedback is critical in shaping our activities.

The survey will be closing at the end of this month.

Fill Out the Survey

New Research

This new study focused on children with TSC and drug-resistant epilepsy (DRE). Identifying children who are at the highest risk for DRE is important for early intervention, which can improve their cognitive development. The research explored whether certain genetic traits in children with TSC were linked to an increased risk of DRE.

Cannabidiol Trial in NSW and ACT

The BEYOND Clinical Trial will explore the effects of Cannabidiol (Epidyolex®) on seizure outcomes in children and adults living with TSC. It is open to members of our Community living in NSW and Canberra. Rural and remote patients are able to participate as it is administered from home, with no need for hospital visits.

Find Out More

You are Invited to TSA's AGM

All members are warmly invited to join TSA's Annual General Meeting (AGM) which will take place via Zoom on Monday 18 November at 7pm AEDT. Please email [email protected] if you would like to be sent the link to join the meeting.

Find Out More

Looking for a Challenge in 2025?

Why not sign up for the Run Melbourne charity run? Registrations are now open and you can sign up to fundraise for TSA. If you register now, you'll have over 6 months to train and fundraise. Email [email protected] if you have any questions about raising money for TSA.

Run Melbourne

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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