We are pleased to announce the recipients of our 2023 Healthy Trajectories seed funding round! These exciting projects have been selected to receive funding of up to $30,000 each and we are looking forward to seeing the important work that will develop from them. You can read more about the four projects below.

Dads And Disability: Co-designing Assistance and Research to Empower (DAD-CARE) 

Research on fathers of children with disabilities is limited, especially in Australia. Existing studies often focus on the challenges of paternal involvement or absence, rather than looking at the strengths of caregiving. The little research done on fathers mostly comes from the USA and Europe, and it’s often not informed by the fathers themselves.

The “DAD-CARE” project, led by Professor Nathan Grills and Professor Bruce Bonyhady, aims to change that. The research will be co-designed, meaning fathers will work with the research team to identify gaps and design research. It will explore the experiences and role of fathers caring for children with disability. Through hearing the voice of these fathers, DAD-CARE hopes to work towards better outcomes for themselves, their children, and other caregivers in their family.

Nathan is a Public Health Physician and professor at the Nossal Institute for Global Health and Melbourne Disability Institute, University of Melbourne. He works on disability largely in the context of India and has both personal and professional interests in disability.

CP-Pathfinding: Your health; co-design of a lifestyle module to empower young adults with cerebral palsy in their health literacy knowledge and participation

CP-Pathfinding is a program made for young adults with cerebral palsy (CP) to help them learn and gain skills for a better life in adulthood. Many young people with CP face challenges in different parts of their lives, affecting their physical health, mental health and general wellbeing. They often feel unprepared for adulthood and lack the support they need.

CP-Pathfinding: Your health aims to complement NDIS-funded participation supports, to increase the participation of young adults with CP in health-related decision-making.

The goal of this project, led by Dr Stacey Cleary, is to create the first of the CP-Pathfinding modules. Your Health will be a plain language resource that assists young people with CP in managing their own health and wellbeing. Developing this module will show how the approach works and set the stage for more CP-Pathfinding modules in the future.

Stacey is a Research Physiotherapist and Post-doctoral Research Fellow with the Centre of Excellence in Cerebral Palsy (CP-Achieve) based at the Murdoch Children’s Research Institute. Stacey’s research centres on promotion of physical activity for young people with cerebral palsy, learning from those with lived experience of disability, enhancing environments to allow for physical activity for all, and translation of research knowledge into clinical practice.

A school-based program to build genetic literacy in students and teachers: A pilot to assess feasibility, acceptability and impact 

More than 7,000 rare diseases exist, with about 72% having a genetic origin. Seven in ten start in childhood and follow a chronic and progressive path. The Australian National Disability Insurance Scheme defines genetic diseases as likely to meet disability requirements. Many people lack “genetic literacy,” causing problems for the 400,000 Australian kids and families dealing with genetic conditions. This lack of understanding can lead to isolation, stigma, and lower quality of life.

In response, the Genetic Support Network Victoria (GSNV) made a biology resource to help teachers teach about genetics. About 300 teachers and 55,000 students used it. This success led to a national program for 10-18-year-olds called The Science Within Us. It aims to boost genetic literacy, encourage inclusion, and improve mental health for kids with genetic conditions. It shares stories of Australian kids with genetic conditions.

This project, led by Hollie Feller, plans to study if The Science Within Us program is feasible, accepted, and impactful. The goal is to refine the program, show demand, and support wider use. The Science Within Us could change generations by improving community understanding and support for kids with genetic conditions, positively affecting future health outcomes.

Hollie is a co-founder and Director of UsherKids Australia, and a fierce advocate for early diagnosis of Usher syndrome through genetic testing and education of clinical professionals as well as support for families around the country to share research and information about the current generation of USH kids. Hollie also works as a Project Officer with the Genetic Support Network of Victoria, based at the Royal Children’s Hospital Melbourne.

The team is also led by Dr. Simone Darling, Senior Research Fellow, Program Manager and Social Innovation Consultant at Murdoch Children’s Research Institute and an honorary Research Fellow in the Department of Paediatrics, University of Melbourne. Simone has more than a decade of experience leading translational research initiatives across health and education in both clinical and community settings, to support child health. Simone co-developed the Mental Health in Primary Schools project which led to strong government relationships across health and education at both State and Federal level, which will be a strong asset for the scale phase of this project.

Customer-directed mealtime services for people with cerebral palsy across the lifespan: What do they need and when do they need it?

Cerebral palsy (CP) is the most common physical disability in kids and stays with them throughout life. Kids with CP can have trouble with movement and posture and this can affect how they eat and swallow. About one in five young people with CP need special diets or tube feeding to get adequate and safe nutrition. Some have ongoing swallowing issues that might get worse as they grow up, but currently there is little evidence documenting this to guide the planning of mealtime services.

This project, led by Associate Professor Kelly Weir, has two parts. The first part involves understanding what people with CP and/or their parents have to say about eating challenges. The second part of this study will look at data from 360 individuals with CP to understand how feeding and swallowing dysfunction changes over time and to identify risk factors associated with worsening of function, aspiration (food or drink going into the airway) and/or lung disease.

This information will be used to develop clinical guidelines for monitoring feeding and swallowing function in individuals with CP. This will help them get the right mealtime supports and services at different stages of their life.

Kelly is the Director of Allied Health Research at the Royal Children’s Hospital Melbourne and Associate Professor of Speech Pathology, Department of Audiology and Speech Pathology at the School of Health Sciences, University of Melbourne. Kelly’s research focuses on improving the health and wellbeing of infants and children with feeding and swallowing difficulties and associated respiratory problems. During this project she is collaborating with lived experience advisors, health professionals and child health researchers from Ability WA, Perth Children’s Hospital, the Telethon Kids Institute and The Royal Children’s Hospital.