Stephanie De Luca – Bachelor of Human Sciences (Human Science and Neuroscience)
Research Intern, Neurofibromatosis Association of Western Australia
When Stephanie De Luca began her internship with the Neurofibromatosis Association of Western Australia (NFAWA), she joined a small organisation with a big goal: improving support, awareness and inclusion for children and young people living with neurofibromatosis (NF).
NFAWA is a volunteer-led organisation that supports people living with NF, a genetic condition that can affect individuals in different ways throughout their lives. At the time of Stephanie’s internship, the organisation was beginning work on a three-year project designed to help schools better understand NF and create more supportive learning environments for students affected by the condition.
For Stephanie, the opportunity offered something she had been looking for.
“I first became interested in the McCusker Centre because I wanted to extend my learning beyond the university campus and into the wider community,” she said.
Her role focused on laying the groundwork for what would become a significant community education initiative. Working closely with NFAWA staff, committee members and families, she researched best-practice programs from around the world, identified service gaps, and helped design a framework for education resources that could be shared with schools across Western Australia.
“We had the idea and the vision, but Steph was instrumental in taking that information and turning it into a plan,” said Community Development Coordinator Lisa Chambers. “She researched what was happening around the world, identified the gaps, and developed a framework that became the foundation of everything that followed.”
That work proved to be far more than a standalone internship project.
Over the following year, a series of McCusker Centre interns built on Stephanie’s research, developing education resources, awareness materials and supporting tools that are now being considered for use by schools and community organisations. What began as research and planning evolved into a comprehensive education package designed to support students, families, educators and carers.
“The actual project has been built and delivered by McCusker interns,” Lisa said. “Everything has come out of that initial work.”
For Stephanie, one of the most rewarding parts of the experience was connecting with members of the NF community and hearing their stories firsthand.
“Hearing people’s stories made me appreciate the potential of the project in a much more personal way,” she said. “It was incredibly motivating to know that the work we were doing could contribute to creating a more informed, connected and supportive community.”
One of the early challenges was the broad scope of the project.
Rather than working to a fixed blueprint, Stephanie had to navigate uncertainty, prioritise information and help shape the direction of an initiative that was still taking form.
“Learning to be comfortable with that flexibility was a very valuable aspect of the experience,” she said.
The internship also changed how she thinks about community support.
Before joining NFAWA, Stephanie had little awareness of neurofibromatosis. By the end of the placement, she had developed a deeper understanding of the role that schools, healthcare providers, families, volunteers and community organisations all play in improving outcomes for people living with the condition.
“The project showed me that sometimes relatively simple things, such as having accessible information or knowing where to find someone with a shared experience, can have a profound impact,” she said.
Lisa believes this perspective was one of Stephanie’s greatest strengths.
“She showed genuine empathy and respect in her interactions with community members,” she said. “She helped ensure their experiences were reflected in a way that was authentic and meaningful.”
For Stephanie, the lesson was clear.
“A McCusker Centre internship allows students to apply their existing skills while also learning from people, organisations and experiences they may never otherwise encounter,” she said.