Welcome to TSA's first eNews for 2024. Happy New Year to you all. In this issue read you can read about:

• Our in person Community Connect event in Sydney - we look forward to seeing you there!
• Funding for abdominal MRIs starts from July 
• TSA's participation in The Navigator Project 

Best wishes, Jackie Gambrell, CEO, TSA 

Please join us at our in person Community Connect event taking place in Sydney on Saturday 23 March.

This event is for families and carers of adults and children living with TSC and adults living with TSC. It is a great opportunity to get together to hear from expert TSC health care professionals, ask them your questions and meet other people living with the same sorts of challenges as you and your family. 

Register before 23 February to take advantage of our Early Bird Discount Pricing. 

TSA is delighted to be selected as one of just three consumer-led organisations that will participate in Rare Voices Australia’s The Navigator Project. 

This project will help further inform the government on providing targeted nurse-led support for people with highly complex conditions where information and access to services may be restricted or challenging.  We hope TSA’s participation will have many positive outcomes for everyone living with a rare disease. Read more here. 

Wednesday 15 May 2024 is TSC Global Awareness Day when people around the globe come together to raise awareness of this rare, genetic disease.

TSA will be hosting a Light the Way Giving Day to mark Global Awareness Day. We invite members of our Community to share their story and shine a light on TSC.

Find out more about how you can get involved by emailing Amy at [email protected]

At the end of last year the government confirmed that funding for MRI of the abdomen under the MBS for patients living with TSC will start from 1 July 2024. This will make abdominal MRIs free to access through bulk billing services.  

Thanks and congratulations again to everyone who supported this application, particularly members of our TSC Community, Rare Voices Australia (RVA) and Dr Matt Sypek and Dr Kathy Nicholls at Royal Melbourne Hospital.

This important, global study aimed to assess whether earlier intervention of vigabatrin in infants diagnosed with TSC could improve developmental outcomes and decrease the likelihood of severe seizures.

Thank you to everyone who donated to, or shared our Christmas Appeal. You raised $6,220 to help people living with TSC. Special thanks to Leiden McMahon for sharing her family’s story and to Anna Beaton for her considerable volunteer help with the campaign.