EOI for the Well-Beans for Caregivers Study Now Open!
As recently announced, TSA has been selected by the TAND Consortium* to be one of just three sites worldwide participating in the Well-Beans for Caregivers Study – an international research project designed to support parents and family caregivers of people living with TSC.
We are now inviting expressions of interest from parents and carers who would like to be invited to participate in this innovative ground-breaking new program.
About the program
The Well-Beans for Caregivers study is based on a World Health Organization (WHO) caregiver wellbeing module, originally developed to support families of children with developmental disabilities and now adapted for the TSC community.
The program draws on Acceptance and Commitment Therapy (ACT) – an evidence-informed approach that helps caregivers manage stress, reconnect with what matters, and take small, practical steps toward better self-care while caring for others.
Research shows that caregiver wellbeing has a direct impact on the person living with TSC. This three-session program aims to strengthen caregiver capacity and resilience.
Program details
Session dates:
- Monday 3 November 2025, 7–9pm AEDT
- Monday 10 November 2025, 7–9pm AEDT
- Monday 17 November 2025, 7–9pm AEDT
Format: Three weekly online sessions (2 hours each) held via Zoom, led by trained professional facilitators.**
What participation involves
- Commitment to attend all three online sessions
- Completion of four short online surveys (before the program, immediately after, and at 3 and 6 months)
Who can take part
The program is open to parents or family caregivers of a person living with TSC (of any age) who:
- Can attend all three online sessions
- Are able to complete the surveys
- Speak English and have reliable internet access with a camera and microphone
Group size is limited – up to two caregivers per family may apply.
Why participate
By joining this program, you will:
- Gain practical tools to manage stress and enhance wellbeing for yourself and your loved one living with TSC
- Connect with other caregivers who understand your experiences
- Contribute to international research aimed at improving support for TSC caregivers
Expression of interest
If you are a parent/carer for a person living with TSC, we invite you to complete the Expression of Interest (EOI) form to be considered for this unique opportunity.
*The TAND Consortium is a group of stakeholders in the Tuberous Sclerosis Complex (TSC) community brought together by Professor Anna Jansen and Professor Petrus de Vries to address important gaps in Tuberous Sclerosis Complex Associated Neuropsychiatric Disorders (TAND) research. It includes 35 members from 16 countries.
**The Well-Beans program is being facilitated by Dr Liezl Schlebusch from the University of Cape Town and Dr Lucas Gutiérrez Lafrentz from the University of Antwerp who are members of the TAND Consortium.