In Series 1 we speak with families and advocates.
The interviewer is Emma Palmer.
Our vision
Our vision is to create:
an oasis for families and support people navigating life with genetic conditions associated with intellectual disability
A space where people feel:
understood
supported
empowered
We create this space through shared stories, expert insights and practical resources.
Series 1 producer:
Beck Fielding from Song Bear Productions
Episode 1
with Stacey Touma
from Belongside Families
What is this episode about?
Episode 1 is a three-part conversation with Stacey Touma, a parent, advocate and CEO of Belongside Families. Stacey shares her experience of learning that her son Alex has Williams syndrome and receiving information that focused on what he might not be able to do. She talks about moving from trying to “fix” her child to supporting him to live a good life, and about the importance of strengths-based information, peer support, shared decision-making and helping young people have a voice in their own health care.
Episode 2 is a conversation with Emma Bonser, CEO of Genetic Alliance Australia. Emma talks about what it can feel like to live with a rare genetic condition, including the loneliness and uncertainty that many families experience. She shares why finding people who understand can make such a difference, and how connection, peer support and community can help people feel seen, supported and less alone. The episode also explores the different ways people find belonging, from one-to-one support to connecting with a wider community.
Episode 3, “From Deficit to Flourishing”, is a three-part conversation with Rachel Callander, a healthcare communication consultant and mother of Evie, who was born with a very rare genetic condition. Rachel reflects on how language can shape the way people and families experience healthcare, and shares practical ideas for clearer, more respectful conversations. She also talks about celebrating strengths, building supportive partnerships, and Evie’s life and lasting impact.
Links coming soon!
Series 2 – In preparation
In series 2 we speak with people with intellectual disability.
The interviewers are
Iva Strnadová
Julie Loblinzk Refalo OAM
Our vision
Our vision for Series 2 is to:
bridge the gap between families and support people, and the health and education systems
improve quality of life
We do this by facilitating meaningful conversations that:
