Have you submitted your Expression of Interest for our NEW online program for parents and carers of children who have a brother or sister living with TSC?

TSA is hosting a NEW online support program for parents and carers 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 living with TSC. Commonly these may include feelings of anxiety, guilt, and isolation.

We will look at tools parents and carers of younger siblings may use to help prevent these issues and also tools to try to repair relationships that have suffered because of the pressures and demands of having a child that needs extra care. The program is therefore relevant to all parents and carers in families with a child or children living with TSC who has brother(s) and sister(s).

The program will include tools based on therapeutic approaches (CBT, mindfulness, emotional regulation) and adapted for parents and carers. It will examine this issue using a lived experience and research rather than a clinical lens.

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 and he has struggled with depression and anxiety for much of his life. He now wants to use his lived experience to help other siblings and parents and carers of children in families with mixed abilities.

Stig is a committee member of TSC Norway and organised the first adult TSC sibling gathering in Norway in 2017.

Workshop 1 (for siblings under 10 years of age) will be held on Tuesday 28 October (7-9pm AEDT).

Workshop 2 (for siblings over 10 years of age) wil be held on Sunday 9 November (4-6pm AEDT).

We are currently inviting expressions of interest from parents/carers who would like to be invited to participate in this innovative new program (if you have already sent us an EOI, you do not need to do so again).

Participant numbers will be limited.

This opportunity has been made available to our TSC Community thanks to Rare Voices Australia (RVA) who have awarded TSA a grant to develop this program, in collaboration with other rare disease organisations, as part of the work being undertaken on the Rare Disease Disability Project.