In this issue we invite you to:

• Submit your expression of interest for our new sibling support program for parents and carers
• Watch Otis on Channel 7!
• Share your TSC story

Wishing you all very best wishes

Jackie, CEO, TSA 

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 a new program 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 with disability. The first phase of this program will be for parents and care givers. 

We are delighted that Stig Magne Evju Brekken, from TSC Norway, has agreed to facilitate this program for us. Stig's younger sister was diagnosed with TSC when she was just 6 months old. He has struggled with depression and anxiety for much of his life and is now using his lived experience to help other families.

More details, including dates and times, will be provided very soon. In the meantime, we invite expressions of interest from parents/carers who would like to be invited to participate. Get in quick, as numbers will be limited. 

Our thanks to little Otis and his mum and dad, Katya and Brenton for helping to raise awareness of TSC. The family appeared on Channel 7 recently as part of Sydney Children's Hospital's redevelopment announcement! 

TAND (TSC-Associated Neuropsychiatric Disorders) is often experienced as behavioural and learning difficulties in people living with TSC. The impacts of TAND can be some of the most difficult symptoms to cope with, and even harder to manage.

In this Zoom information session Dr Rebecca Mitchell, a developmental paediatrician and TSC researcher will share her expertise regarding the symptoms, diagnosis, treatment and management of TAND. 

Angiofibromas, while not dangerous, can be emotionally and socially challenging, especially during adolescence. This study explored whether a 1% sirolimus cream could safely and effectively treat facial angiofibromas in children and young adults living with TSC.

Our Community Stories tell what it's like to live with TSC. They are some of the most widely read pages on our Website and we know that people in our Community find connection and comfort through reading these stories. If you would be willing to share your/your family's TSC story, we would love to hear from you. We will arrange a 45 minute phone call and write up a draft of your story for you to review and change in whatever way you like. If you are willing to share your story, please email [email protected]