Dear ,

Welcome to our March 2025 eNewsletter. In this issue we encourage everyone in our TSC Community to get involved in hosting an event to raise awareness this TSC Global Awareness Day and we ask you to share your NDIS expertise.

Very best wishes

Jackie Gambrell, CEO, TSA

TSA's Impact Report 2024

We are delighted to share our new, fully digital, Impact Report for 2024 in which we celebrate the members of our Community who share their stories, donate, volunteer, fundraise, raise awareness and give back. Thank you to everyone who helps us to support the TSC Community in Australia.

Take a Lookt

Will you help raise awareness of TSC?

Our Light the Way Giving Day is taking place on TSC Global Awareness Day,Thursday15 May. We encourage everyone in our Community to get involved in helping to raise awareness of TSC and much-needed funds for TSA. To find out how, please get in touch with Amy by emailing [email protected]

New research looking at how vigabatrin affects brain imaging in babies living with TSC

This study explored the relationship between vigabatrin, a medication used to treat seizures in infants with TSC, and certain brain changes observed in magnetic resonance imaging (MRI) scans. Researchers aimed to determine how often these MRI changes occur and whether they lead to noticeable symptoms in infants.

Read the Research

Parker

We last featured Parker's story when he was 4 years old and just starting Kindergarten. Parker has just turned 9 years of age and is in Year 4 at his local primary school. His mum Katherine has kindly share an update on their TSC journey, which includes mastering how to ride his new dirt bike.

Parker's Story

Zoom event on everolimus and sirolimus

Many people living with TSC are now prescribed everolimus or sirolimus, which are the mTOR inhibitor treatments. 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 life-changing medications.

Please share your NDIS expertise with us

Thanks to funding from Sanofi, we are about to start work on a new NDIS resource for people living with TSC. TSA's nurse, Katrina Watt, will lead development. We know many of you have very valuable insights into the NDIS. If you are happy to be involved in helping shape this new resource by providing ideas, materials and/or reviewing drafts, please get in touch with Katrina by emailing [email protected]

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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