Help shape vision research
Consumer resources
These audio and visual resources share people living with vision loss’ contributions to medical research through advocacy, insights and participation in clinical trials.
The insights, experiences and perspectives of people living with eye diseases make invaluable contributions to our research.
The resources are designed to share how consumers contribute to our research, the experience of participating in a clinical trial, and how people can get involved.
Watch: Working well together
Listen: Hope in Sight audio library series
This series features the voices and stories of people who have been involved in research activities within the Centre for Eye Research Australia and Cerulea Clinical Trials sharing their experience living with vision loss, journey to medical research and the contributions they have made.
This series is directed by Kelly Schulz and produced by Fleur O’Hare.
Episode 1 – Trish
Trish, a New Zealander living in Australia with Usher syndrome, shares her journey from initial diagnosis to participating in medical research. She was initially reluctant to participate in medical research due to her past experiences, but her involvement in clinical trials has provided her with a sense of control and hope. She shares the supportive community she is a part of, and the positive impact of research on her life and for the broader Usher syndrome community.
Episode 2 – Manda
Manda is a mother of two from regional New South Wales and was diagnosed with ocular melanoma in April 2024. Her melanoma was caught early, and she participated in a clinical trial in Melbourne, traveling four hours each way for 12 weeks. Despite her initial fears she found the experience supportive and reassuring, and would like to see more regional trial opportunities made available to more people.
Episode 3 – David
David lives with retinitis pigmentosa – an inherited retinal disease caused by a genetic fault. In the past he was told that treatments for inherited retinal diseases were 20 years away, but advances in research are now putting treatments within reach. Informed by his own background in science and research, he shares why people’s participation in research has been crucial to not just this progress, but advancing the scientific community as a whole.
Episode 4 – Cheng Yi
Cheng Yi is an orthoptist who specalises in pediatric eye care and shares her personal and professional experiences with eye conditions and clinical research. Cheng Yi discusses her short-sightedness since childhood, her move to Australia for professional growth, and her work with children. She also shares her journey with thyroid eye disease, including her decision to participate in a clinical trial at CERA, and the challenge of being both a participant and a professional.
Episode 5 – Matt
Matt discusses his journey with retinitis pigmentosa, a condition he has lived with since childhood. He reflects on his initial reluctance to engage with medical professionals and his growing interest in health and research, particularly in the last five years. He also shares how the evolving approach taken by medical professionals has led to more supportive and inclusive experiences for people like himself.
Episode 6 – Lyn
Lyn’s career as a training manager and later an interior designer relied on her sight, so her diagnosis of an eye condition with no treatment came as a shock. Her determination to take a proactive approach led her to join a clinical trial so she could contribute to research that could potentially benefit future generations. She shares the importance education played in overcoming her fears, the welcoming environment of a clinical trial, and her hope for future treatments.
Episode 7 – Alex
Alex works in film and TV and has Usher syndrome – a rare genetic condition that affects both hearing and vision. He recounts his brother’s initial diagnosis and subsequent genetic testing that revealed the family carried the diagnosis, as well as how he adapted to his visual impairment, particularly night blindness. Alex also shares the relatively low risks and huge benefits that come from participating in research that has the potential to benefit both himself and others.
Episode 8 – Tom
Tom is a 79-year-old grandfather and passionate advocate for medical research. Diagnosed with glaucoma in 2011, Tom’s journey into clinical trials began with the health struggles of his loved ones—his mother’s severe glaucoma and his wife’s Alzheimer’s disease. He has participated in clinical trials since 2017 and finds comfort in the both the process of research and the progress in glaucoma he has seen over the years.
Read: Partnership Post Newsletter
The Partnership Post is the bi-yearly newsletter specifically for members of our Consumer Program. It provides updates on consumer-researcher partnership activities happening across the Centre for Eye Research Australia (CERA) and Cerulea Clinical Trials.