Associate Professor Erin Turbitt
Chief Investigator
A/Prof Erin Turbitt is an Associate Professor and social scientist in the Genetic Counselling Discipline at University of Technology Sydney. She specialises in parental decision-making and the social and behavioural outcomes of genomic testing, focusing on supporting families of children with genetic neurodevelopmental conditions.
Elizabeth Callinan
Chief Investigator
Ms Elizabeth Callinan advocates for parents to receive balanced, accurate, and timely information about genetic conditions. Her daughter was diagnosed with mosaic Down syndrome just before her second birthday. With a background in social work and social policy, she brings a multidimensional perspective on the ethical complexities of genetic technology.
Professor Elise van den Hoven
Chief Investigator
Prof Elise van den Hoven is a Professor in Interaction Design and Visualisation at the University of Technology Sydney. Her research spans human-computer interaction, design, cognitive psychology, and support of human remembering practices.
Professor David Amor
Chief Investigator
Prof David Amor holds the Lorenzo and Pamela Galli Chair in Developmental Medicine at the University of Melbourne. He is a Consultant Clinical Geneticist and Paediatrician at the Royal Children’s Hospital Melbourne and leads the Neurodisability and Rehabilitation group at the Murdoch Children’s Research Institute. His research focuses on human genetic disorders and improving the lives of children with neurodevelopmental disabilities.
Professor Bronwyn Hemsley
Chief Investigator
Prof Bronwyn Hemsley is Head of Speech Pathology at and co-lead of the Disability Research Network at the University of Technology Sydney. She has 35 years of experience working with children and adults with disabilities. Her research focuses on inclusive, collaborative research to improve communication technologies for people with disabilities.
Professor Alison McEwen
Chief Investigator
Prof Alison McEwen is a Professor in Genetic Counselling at the University of Technology Sydney and past president of the Human Genetics Society of Australasia. She led the establishment of the Genetic Counselling Discipline at UTS using co-design principles.
Associate Professor Emma
Palmer
Chief Investigator
A/Prof Emma Palmer is a clinician-scientist geneticist with a PhD conferred in 2019 and an NHMRC Investigator Grant awarded in 2021. She has significant clinical and research experience in rare genetic conditions, especially genetic epilepsy.
Doctor April
Morrow
Chief Investigator
Dr April Morrow is a Senior Research Associate at the University of New South Wales. Her research applies implementation science and behavior change theory to improve healthcare service delivery, particularly in genetics and oncology. She is also an FHGSA certified genetic counsellor.
Associate Professor Honey Heussler
Chief Investigator
A/Prof Honey Heussler Medical Director of the Child Development Program and Senior Medical Officer in Sleep Medicine at Children’s Health Queensland. She is a developmental and behavioral paediatrician with a dual qualification in sleep medicine, focusing on genetic neurodevelopmental conditions and sleep issues.
Doctor Julia Dray
Project Manager
Dr Julia Dray is a Senior Research Fellow and Lecturer in Speech Pathology at University of Technology Sydney. Her work focuses on lived experience research in mental health, resilience in children and adolescents, and evaluations of complex implementation science-based approaches to improve health and mental health care.
Yufeng Wu
Research Assistant
Yufeng Wu is a PhD candidate and casual academic at University of Technology Sydney. His research focuses on how technology can be used to enhance the well-being of people in need. Prior to this, he received a Master’s degree in communication design (Pratt Institute). He has worked as a User Interface/User Experience Designer at Tencent.
Helen Willacy
Genetic Counselling Research Student
Helen Willacy is a student in the Master of Genetic Counselling programme at University of Technology Sydney. She has a background as a teacher in a range of contexts including primary, secondary and special education. During her Master of Education studies at the University of Waikato, she carried out research into engagement in learning utilising mobile phone apps in a health school environment. She is the mother of three young adults, one of whom lives with the genetic condition Tuberous Sclerosis Complex.
Amy Griffiths
Research Assistant
Amy Griffiths is a research assistant at University of Technology Sydney and a special-education teacher. She specialises in working with students with moderate to severe intellectual disabilities. Amy has a Graduate Diploma in Psychology (Advanced) candidate from the University of Technology Sydney. Her Masters research focused on teacher well-being and burnout in special education contexts. She has a background in art education and Australian art history.
| Dr Barbara Doran | University of Technology Sydney | Artist, Lecturer in Transdisciplinary School, expert in arts-based methods (NSW) |
| Ms Pieta Shakes | James Cook University | Parent consumer and EMCR with expertise in co-design (QLD) |
| Prof Christine Imms | Murdoch Children’s Research Institute | Occupational Therapist and Professor in Neurodevelopment And Disability (VIC) |
| Prof Benjamin Wilfond | University of Washington | Paediatrician and Professor in Bioethics (USA) |
| Assoc Prof Natalie Taylor | University of New South Wales | Associate Professor in Implementation Science (NSW) |
| Dr Lisa Dive | University of Technology Sydney | Researcher in Bioethics with expertise in ethical and social aspects of genomics (NSW) |
| Dr Tatiane Yanes | The University of Queensland | Researcher and Genetic Counsellor with expertise in paediatric genomics (QLD) |
| Prof Iva Strnadova | University of New South Wales | Professor in Special Education and Disability Studies (NSW) |
Heather Renton
“I’m passionate about better pathways for people with health & disability needs. I’m an avid Paul Kelly fan and the line ‘from little things, big thing grow’ resonates in so many different ways.”
Maya Pinn
“The first five years after diagnosis were a blur. For me, turning that experience into something positive became a way forward.”
Heather Cox
“For me it’s about supporting our community and my daughter and supporting future parents who go through the diagnostic journey.”
Joel Taggart
“We haven’t had very good service from the systems that should be looking after us. I’m involved to help future parents, to smooth the journey.”
Falak Helwani
“As a rare disease mum, researcher and advocate, I wear many hats. I hope to draw on all these perspectives in my contributions to the project, with a focus on providing broad rare disease peak body expertise on behalf of Rare Voices Australia.”
Meagan Cross
“Being part of the Foundation for Angelman Syndrome Therapeutics (FAST) is deeply personal for me. My own daughter’s diagnosis was overwhelming, and that experience fuels our work to make sure families coming after us are better supported.”
Daniel Aitchison
“My daughter has a rare genetic condition and I’ve also grown up with my brother who has a different rare genetic condition. In my professional life I focus on supporting organisations from a governance point of view.“
Belinda D’Amico
“I like to find positives in every day, every moment. Even on the hard days, I remind myself to be grateful and to see and appreciate all the love, determination, and positives that my kids bring and they bring A LOT!”
Nyleta McRae
“Our journey with Fragile X started really bumpy. This project seems like something that is so desperately needed in our community. I feel like I’ve ended up being a person who just was so lucky to link to the right people and services to get help and information and I’m constantly trying to share it all the time.”