As we close the chapter on the 2024 / 25 financial year, we want to take a moment to thank you for being part of something truly life-changing. Through our collaboration with the University of Adelaide, your generosity helped us do something that too often gets overlooked: take the time to listen to the needs of families of children with craniofacial conditions.
The research team, funded by Craniofacial Australia, sat down with parents whose child had a craniofacial diagnosis. Families spoke openly about the emotional turmoil, the fear of the unknown and the loneliness that followed. Many described feeling overwhelmed by medical terminology, unsure where to turn for support, and desperate to find answers.
Prof Rachel Roberts, who leads the research team, explains:
“Families expressed that too often, they are simply given medical information without being asked what they need before, during and after surgery.”
This year, will you stand with us by donating to our Resource Hub Appeal?
Every day, another family faces the unknown
When Harry was diagnosed with Isolated Sagittal Craniosynostosis at just 8 weeks old, his parents Kate and Reece were devastated. Confused and overwhelmed, they faced a maze of unanswered questions - until they connected with Craniofacial Australia.
“Scattered and confused, I contacted Craniofacial Australia and spoke with Claire (Family Support Cooidinator). I had so many questions which she calmly answered with compassion and guidance. It was comforting to hear from Craniofacial Australia, checking in on us on a regular basis" Kate says.
Harry’s family found the guidance and hope they desperately needed.
Post-surgery, Harry is smiling again and back to his cheerful self – a true fighter. But like Kate and Reece, many families still face a frightening diagnosis without clear information and support.
“I wish that from diagnosis, we’d had immediate access to clear, credible, and tailored information. Instead, we were left to advocate for ourselves, piece together resources, and do our own research. I often felt like I had to fight to be heard.”
Hearing stories like Kate’s and other families’ further reinforces our commitment to bridging the gap - not with more medical jargon, but
with empathy, understanding, and resources built around the real needs of families.
A dedicated Resource Hub would have made all the difference, offering immediate answers, support, and comfort during their hardest days.
Knowledge is Power - discover the
Resource Hub
We now have plans to develop
evidence-based psychosocial resources.
Specifically, a Resource Hub grounded in the best available health research.
The Craniofacial Australia Resource Hub will be a one-stop shop of information on our website for parents, siblings, friends, extended family members and support networks.
The Resource Hub will help people to:
• Understand the diagnosis in clear, supportive language
• Navigate the medical system with confidence at every stage—diagnosis, surgery, and recovery
• Prepare siblings, family and the wider community to be part of a loving, informed support system
• Access ongoing emotional support to reduce anxiety and promote resilience
It’s no stretch to say that these are more than just resources - they’re lifelines for families during one of the most uncertain times of their lives.
“Your donation can truly change lives — just like Craniofacial Australia changed ours. We don’t yet know what the future holds for Harry or if our future children may face the same challenges. But we do know that we are no longer alone in this journey,” Kate says.
Please donate before 30 June to help us develop and launch the Resource Hub.
Resource Hub Appeal
$50
helps us print and distribute tailored brochures and toolkits in our Care Packs
$100
funds the fulfilment and distribution of a Care Pack for one family
$250
powers a robust suite of interactive and engaging resources for the Resource Hub such as videos, toolkits and more
$500+
brings us closer to reaching even more families through financial assistance packages and availability of our Family Support Coordinator
For any gift you can give toward the Resource Hub Appeal, we thank you.