Congratulations Elle!

We are delighted to announce that Eleanor Farley (Elle), TSC Clinical Nurse Specialist at Sydney Children's Hospital is the winner of this year's Elizabeth Pinkerton Memorial Award. Congratulations Elle!

Elle was described by members of our TSC Community as, "a trusted and caring presence who brightens even the hardest days."

Thank you Elle and all the amazing health care professionals who work so tirelessly to support the TSC Community in Australia.

Have you sent us your expression of interest?

In October and November TSA will be hosting a NEW support program for parents and carers which aims to raise awareness and understanding of some of the issues that can be experienced by a child who has a brother or sister living with TSC. Commonly these may include feelings of anxiety, guilt, and isolation.

The program is relevant to all parents and carers in families with a child or children living with TSC who has brother(s) and sister(s). You can find out more here.

Our thanks to Rare Voices Australia (RVA) for awarding TSA a grant as part of the work being undertaken on the Rare Disease Disability Project to help us develop this program.

Expression of Interest

Alison and David share their TSC stories

Alison McIvor and David Matheson are both adults living with TSC. In this session via Zoom they have kindly and generously offered to share their personal stories with our TSC Community. Find out what living with TSC is like for them.

Safety and effectiveness of mTOR inhibitor treatment for SEGAs in TSC

This new study looks at the long-term use of the mTOR inhibitor (mTORi) medicines everolimus and sirolimus for treating subependymal giant cell astrocytomas (SEGAs) in people with TSC.

Read the Research

Understanding TAND - video now available

Our sincere thanks to Dr Rebecca Mitchell and to everyone who attended our recent event on Understanding TAND (TSC-Associated Neuropsychiatric Disorders). The video of Dr Mitchell's excellent presentation is now available on the TSA website.

Watch the Video

Lilly's story

Lilly is one of Erin and Dave's 4 daughters. She was diagnosed with TSC before she was even born. Lilly is now 12 years old. In this very moving story Erin shares what it's like living with Lilly's TSC and reflects on the joy and strength that she brings their family. “This disease doesn’t define Lilly,” Erin says. “She’s Lilly, not her diagnosis. Just like someone might have green eyes, Lilly has TSC.”

Read Lilly's Story

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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