Welcome to TSA's July eNews. In this busy issue we share a very exciting update about abdominal MRIs for people living with TSC plus:

• Videos from our Community Connect event are now available online
• Join our upcoming Zoom Education event on how TSC may affect a woman's menstrual cycle
• Read our two recent TSC research updates.

Best wishes 

Jackie Gambrell, CEO, TSA 

Thanks to your support helping TSA advocate for change, we are delighted to share the exciting news that magnetic resonance imaging (MRI) of the abdomen is going to be funded under the medical benefits scheme (MBS) for patients living with TSC in Australia. This will make abdominal MRIs free to access through bulk billing services. We would like to thank everyone who worked with us to achieve this significant change. We will keep you updated on when it will take effect. 

TSA's Community Connect event for adults was held in Melbourne on Saturday 3 June. It was a great day of learning, connecting and sharing.

You can watch videos of the excellent keynote presentations by clicking on the links below:

Dr Matt Sypek on kidney issues in TSC

Dr Helen Whitford on LAM

This award is given annually by TSA to a health care professional to recognise their efforts to improve the lives of people living with TSC in Australia. Nominations come from you, the TSC Community. Your nomination for a health care professional who has gone 'over and above' for you or your family must be submitted by the end of July. All health care professionals – whether they are the winner or not – are told of their nomination. We know this sort of recognition means a lot to them. 

Join us online on Wednesday 26 July @ 7.30pm AEST for a Zoom education event on how and why TSC may affect a woman's menstrual cycle. Dr Kaushi Arulpragasam will talk about:

• Behavioural changes that can occur during the menstrual cycle and how to manage them
• Women's gynaecological health and issues such as contraception, fertility and pregnancy planning.

This is a free event for TSA members, however registrations are essential.

We are delighted to share that just over $22,300 was raised for TSA at the 10th and final Lizzie's Lunch held on Sunday 25 June 2023 at the Hills Lodge.

Lizzie’s mum, Sue Pinkerton, and her family have hosted this special event each year for the past 10 years raising a total of $157,000 since inception. 

TSA thanks Sue for her incredible efforts inspiring so much support from her community to help families affected by TSC. What an incredible achievement.

Researchers at UCLA in the USA are studying the effects of early behavioural intervention on developmental outcomes in infants and toddlers diagnosed with TSC. This exciting study is adapting an established intervention. It is based on remote delivery - through videoconferencing - and eligible participants in Australia are invited to enrol. 

Recently TSA has shared updates and insights on two TSC research projects. In case you missed them here are the links:

Menstrual Irregularities in TSC

TAND and TSC

Thank you to everyone who chose to make a contribution to TSA at the end of the financial year. We appreciate your generosity in supporting our tax time appeal - over $5,600 was donated.

Thanks too to everyone who has become a member of TSA. If you've not joined or renewed your membership yet, please click here to go ahead.

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