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Welcome to TSA's August eNewsletter.

In this issue we provide you with an update on the Vigabatrin (Sabril) supply situation plus:

  • Comedy for a Cure tickets are now on sale 

  • Research on the Safety of Sirolimus in children under 2 years old
  • Read Lucia's Story

TSA is here for you and your family. Please reach out for any help you may need to manage your or a loved one's TSC. We are stronger together.

Best wishes, Jackie Gambrell, CEO, TSA 

The supply of Vigabatrin (Sabril) in Australia

Some members of our TSC Community have been affected by a shortage of Vigabatrin (Sabril). This has been caused by a pharmacy recall. If you are having any difficulty obtaining a medicine that has been prescribed to you, please talk to your doctor or pharmacist to discuss suitable alternative options, such as temporarily accessing sachets rather than tablets.

Read more here

Earlybird tickets are now on sale for Comedy for a Cure

Calling all Sydneysiders - please join us for Comedy for a Cure 2023 on Saturday 28 October, from 7pm at Paddo RSL.

Come along for a hilarious night where we will come together to harness the power of laughter and raise vital funds to help individuals and families impacted by TSC (Tuberous Sclerosis Complex). 

Great prizes to be won, discounts available for group bookings and very funny comedians to be entertained by.

Get your EARLYBIRD tickets today!

Research update on the safety of Sirolimus in children under 2 years old

In the last decade, the two mTOR inhibitor treatments Everolimus and Sirolimus have proven effective in reducing tumour size and improving seizure control for many people living with TSC. However, there is limited research on their use in very young children. Read about the latest study that investigated the safety of Sirolimus in children with TSC below the age of 2 years as well as learn more about the opportunity to get involved in a clinical trial taking place in Australia.
Find out more

Lucia's story

Little Lucia was born with both TSC and Polycystic Kidney Disease. Her mum Francesca recently shared their family's story. TSA would like to thank Lucia's family for sharing their story with the TSC Community.

Read Lucia's story

Video from TSA's latest Zoom event   

Thank you to everyone who joined us on Wednesday 26 July for a Zoom education event on how and why TSC may affect a woman's menstrual cycle. Dr Kaushi Arulpragasam shared excellent insights on menstruation, pregnancy and fertility in TSC. in case you missed it, you can watch the full video presentation.

Watch now

TSA memberships

Thank you to everyone in our TSC Community who has renewed or taken out a TSA membership. We apologise to some of our recently renewed members who were impacted by the IT glitch that wrongly sent off renewal reminders to current members. We've reached out personally to everyone we think was affected by this technological malfunction and assure everyone no data was compromised. We welcome you to get in touch if you have any questions or concerns. Also, if you've not yet signed up or renewed your TSA membership yet please click here.

TSA is here for you and your family

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 nurse@tsa.org.au

You can also find the latest TSC information at tsa.org.au

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