Welcome to our eNews for March 2024. In this issue:

• Register now for our Community Connect event in Sydney on Sat 23 March - see you there! 
• Can you spare 5 minutes to help raise awareness of Tuberous Sclerosis Complex (TSC)?
• Read the latest research on everolimus in clinical practice

Best wishes, Jackie Gambrell, CEO, TSA 

Thanks to financial support from AFT Pharmaceuticals the registration fee for our Community Connect event taking place in Sydney on Saturday 23 March is now just $25 per person for family members/carers of adults and children living with TSC. And, thanks to NDCI grant funding adults living with TSC can attend for free! 

This is a great opportunity to hear from expert health care professionals, ask them your questions and meet and learn from other families and people affected by TSC. You must register by Mon 18 March to attend. 

The full program for the day is now on our website. 

If you can spare 5 minutes of your time to record your TSC story and help raise awareness of TSC on Global Awareness Day, we'd love to hear from you. This can be done at home, at a time to suit you. We'll email you a link to just answer a couple of questions and tell us your story. If you want to help out, please  email Amy at [email protected]

Research trials of everolimus have demonstrated promising outcomes in reducing tumour size and seizure frequency. However, the safety profile of everolimus includes potential adverse effects that may impact quality of life. This recent research study looks at the safety and efficacy of everolimus in real-world clinical practice. 

Our friends at Association for Children with a Disability are running free online workshops to help parents/carers of children with developmental delays or disability navigate the information and support services that are out there. The “First Steps to Support & Connection” workshops can help you find what you need to support your child.

TSA is delighted that Sanofi is supporting the development of a new online medical resource on TSC for General Practitioners (GPs). If you would like to be involved in helping shape this new resource by providing ideas and reviewing drafts, please get in touch with us by emailing [email protected]