2025 Inherited Retinal Disease Patient and Family Day

25 October 2025

9.30am – 4.00pm AEDT

454 Glenferrie Rd, Kooyong, VIC 3144

This event has ended

Free for everyone

Forum

A man standing on a stage with an audience of people facing toward him.

Join us for an informative and inspiring event designed for individuals and families imacted by an inherited retinal disease (IRD), alongside health professionals who support this community. This event offers a unique opportunity to learn about the latest developments in IRD research, including cutting-edge treatments, clinical trials, and the future of gene and cell therapies.

Hear directly from leading scientists, clinicians, and patient advocates as they share insights into the progress being made to understand, treat, and ultimately cure IRDs. Attendees will have the chance to ask questions, connect with others in the IRD community, and explore how research is transforming the landscape of care and hope.

Whether you're personally affected by an IRD, provide clinical care, or simply want to stay informed, this event promises valuable knowledge, connection, and empowerment.

Who should attend:

Individuals and families impacted by an IRD
Eye care professionals who support people impacted by an IRD,such as opthalmologists and optometrists
Community organisations who support people living with a vision impairment

Event Highlights:

Presentations on current and emerging IRD research from leading experts across Australia
Updates on clinical trials and treatment pathways
Patient and caregiver perspectives
Q&A with experts in the field
Meet a Seeing Eye Dog and ask the team your questions
Explore the Vision Australia Store and low vision aids that are available for purchase

Come be part of a growing community united by knowledge, progress, and shared purpose.

This event is proudly hosted by UNSW Sydney (School of Clinical Medicine) and the Children's Medical Research Institute (Stem Cell Medicine group). This event was funded through a Medical Research Futures Fund Stem Cell Therapies Mission grant, and the venue has kindly been provided by Vision Australia.

About

For

General Public

Price

Free for everyone

Speakers

Associate Professor Anai Gonzalez-Cordero

Invited speaker

Associate Professor Anai Gonzalez-Cordero is a leader in the field of stem cells and their differentiation into organoids with an emphasis on translational research to develop novel therapies for retinal genetic diseases. She is an Al & Val Rosenstrauss Fellow, a Group Leader of the Stem Cell Medicine Group and Head of the Stem Cell & Organoid Facility at the Children’s Medical Research Institute (CMRI).

Through her innovative research, Associate Professor Gonzalez-Cordero is at the forefront of developing transformative treatments for vision loss, offering hope to individuals affected by retinal disease.

Dr Eden Robertson

Invited speaker

Dr Eden Robertson is a psychosocial researcher and Postdoctoral Fellow at UNSW Sydney, with a decade of experience supporting families affected by rare diseases, including inherited retinal diseases (IRDs), childhood cancer, and developmental epileptic encephalopathies.

She led Australia's Inherited Retinal Disease Priority Setting Partnership, launched at NSW Parliament House in 2024, to identify community-driven research priorities. Her research now focusses on understanding the IRD communities perspectives of novel therapies, and developing interventions to support the patient-centred approach to implementing these.

Harrison Kirkwood

Master of Ceremonies

Harrison Kirkwood is a passionate Australian disability advocate who has lived with vision impairment since birth due to Peters Anomaly. He lost all of his sight as a teenager and has since dedicated himself to promoting accessibility and inclusion. As Singleton Council’s Access and Inclusion Officer, he led their inclusion campaign video series, fostering inclusive community engagement. A former Save Sight Institute Youth Ambassador, Harrison has shared his experiences transitioning to adulthood with vision impairment, inspiring others to embrace opportunity and resilience. His advocacy extends to local, state, and national disability advisory panels, where he champions systemic change for people with disabilities.

Professor Lauren Ayton AM

Invited speaker

Professor Lauren Ayton AM is a clinician-scientist specializing in vision restoration and inherited retinal diseases (IRDs). She holds dual appointments at the University of Melbourne and the Centre for Eye Research Australia (CERA), where she co-leads the Retinal Gene Therapy Unit and the VENTURE IRD registry. Her research encompasses gene therapy, low vision interventions, and clinical trials aimed at improving outcomes for individuals with IRDs.

Recognized for her contributions to optometry and ophthalmology, Professor Ayton was appointed a Member of the Order of Australia in 2025. She also serves as the Associate Dean of Innovation and Enterprise at the University of Melbourne, promoting research translation and innovation.

Dr Alexis “Ceecee” Britten-Jones

Invited speaker

Dr Ceecee Britten-Jones is a clinician-researcher at the University of Melbourne and Centre for Eye Research Australia, with expertise in inherited retinal diseases. She is an Australian-registered optometrist and holds a PhD from the University of Melbourne.

Ceecee leads research studies on how genetic changes cause inherited retinal diseases and how genetic information can improve disease monitoring and access to novel treatments. She was recently awarded two prestigious grants - a National Health and Medical Research Council Investigator Grant and a Medical Futures Research Fund Early to Mid-Career Researchers Grant - focussed on novel genetic sequencing technologies to improve the diagnosis of inherited retinal diseases.

Dr Livia Carvalho

Invited speaker

Dr. Livia dos Santos Carvalho is a Senior Lecturer in Optometry and Vision Sciences at the University of Melbourne and an Adjunct Senior Research Fellow at the University of Western Australia, affiliated with the Lions Eye Institute. She obtained her BSc in Biological Sciences from the University of Brasília, MSc in Neuroscience, and PhD in Genetics from University College London.

Her work centers on developing gene therapies for severe inherited retinal dystrophies and exploring the cellular and molecular mechanisms underlying age-related macular degeneration and other visual disorders.Through her research, Dr. Carvalho hopes to develop new ways to protect and restore sight.

Dr Thomas Edwards

Invited speaker

Thomas Edwards is a consultant vitreoretinal surgeon at the Royal Victorian Eye and Ear Hospital (RVEEH) and Principal Investigator at the Centre for Eye Research Australia (CERA). He holds a dual appointment in the Vitreoretinal Unit and the Ocular Genetics Clinic at the RVEEH. He completed his PhD at the University of Cambridge and was the recipient of a Nuffield Fellowship to the University of Oxford. As head of CERA’s Retinal Gene Therapy Unit, he leads a research group working on translational projects involving retinal gene therapy, including clinical trials.

Debbie Loke

Invited speaker and panellist

Debbie Loke is Vision Australia’s National Social Support and Wellbeing Lead. Her background is Orthoptics. With over 24 years of experience as an Orthoptist in General Ophthalmology, including a year specializing in Low Vision, Deb has dedicated her career to improving the lives of individuals with visual impairment. Her professional journey also includes 18 months as a Clinical Research Coordinator in the Ophthalmic research field, and 23 years as a Clinical Educator supporting, supervising and mentoring Orthoptic students on Clinical Placements. As the National Social Support and Wellbeing Lead, her key responsibilities include transforming and managing the wellbeing and social support programs within Vision Australia. She understands the power of collaboration, and she is passionate about empowering her teams to achieve success.

Ben Pettingill

Invited speaker

Ben Pettingill has made a name as one of Australia’s most sought afterspeakers, presenting everywhere from large conferences and corporate events, right through to sporting clubs and school groups. Harnessing his own lived experience with extensive research, Ben shares and instils the importance of embracing change, focusing on the controllables, supporting and strengthening mental health and increasing inclusion in a real, raw and relatable way.

Ben ensures he doesn’t just deliver valuable messages and practical strategies to his audience, he lives them! Everyday he is driven by his commitment to simply, ‘Make The Most’. This mindset has seen Ben become the first legally blind person in the world to compete in Spartan Obstacle Course Races, compete in the Southern 80 water skiing race against able bodied competitors and trek the Kokoda Track in Papua New Guinea, not once, but twice.

Ben is a strong mental health advocate and he’s passionate about raising awareness around mental health, smashing the stigma that still exists and help people get comfortable talking about the tough stuff in life. This shows in his role as ambassador of Ski For Life, an Australian charity dedicated to promoting mental health, wellbeing and suicide prevention in rural and regional areas across the country. Ben also keeps mental health front of mind through his podcast, ‘Talkin Tough’, where episodes are down to earth conversations with everyday people about all aspects of life including what it really means to be ‘tough’.

Liliana Russell

Invited panellist

Liliana Russell is a passionate educator and advocate based in Canberra, with 35 years of experience supporting young people to achieve their best, especially those facing challenges. She is passionate about the wellbeing of students with a disability and the value of true inclusion and diversity. Diagnosed with retinitis pigmentosa in her late twenties, Liliana has become an active voice in the vision impairment community, advocating for awareness, research, and support for people living with inherited retinal diseases.

Additionally, Liliana enjoys volunteering and have spent many hours with her husband and two beautiful daughters at various sporting fields (although she says she has had a few close calls with random flying soccer balls!). Her approach to life is reflected in her love of singing, even while acknowledging she “can’t sing very well.” Liliana embodies a philosophy of showing up, embracing new experiences, and giving everything a go.

Parker Truong

Invited speaker

Parker is a Genetic Counsellor who works with individuals and families affected by genetic conditions, supporting them to understand their genetic information and what it may mean for their health and future. He works in inherited retinal disease in a research setting at the University of Melbourne and CERA, and in a clinical setting at the Royal Melbourne Hospital. He also works with cancer patients and people at increased risk of cancer at the Peter MacCallum Cancer Centre. Parker is committed to helping people feel informed and supported to make decisions that align with their values and what matters most to them.

2025 Inherited Retinal Disease Patient and Family Day

Associate Professor Anai Gonzalez-Cordero

Dr Eden Robertson

Harrison Kirkwood

Professor Lauren Ayton AM

Dr Alexis “Ceecee” Britten-Jones

Dr Livia Carvalho

Dr Thomas Edwards

Debbie Loke

Ben Pettingill

Liliana Russell

Parker Truong

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