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October has been a month of recognition, connection and continued progress towards a future without inherited blindness.
Our AGM on 21 October provided an opportunity to reflect on Retina Australia’s work and recognise the people helping to shape the future of inherited retinal disease (IRD) research.
I am delighted to congratulate Professor Erica Fletcher, recipient of the 2026 Retina Australia Hall of Fame Award, recognising her outstanding contribution and long-standing commitment to retinal research over more than 25 years. We also congratulate Dr Daniel Urrutia-Cabrera, recipient of the 2026 Emerging Scientist Award, whose research into retinal repair and restoration of vision represents the innovation and promise of the next generation of researchers.
We also announced the two recipients of our 2027 Retina Australia Research Grants: Dr Isabelle de Luzy and Dr Livia Carvalho. Their projects aim to advance gene therapies for EYS-associated retinitis pigmentosa and PDE6C-associated achromatopsia, respectively. Both address significant unmet needs and demonstrate the importance of sustained investment in research that brings us closer to better treatments and, ultimately, cures for IRDs.
Congratulations to all our award recipients and researchers. Their achievements remind us why Retina Australia’s continued investment in research matters, and why supporting the people behind scientific progress is just as important as supporting the research itself.
Turning awareness into action
World Sight Day on 8 October provided another important opportunity to reflect on the theme “Every Story Counts”. Behind every diagnosis of an inherited retinal disease is a person, a family and a unique experience of navigating uncertainty, change and the search for answers.
At Retina Australia, we know that progress means more than scientific discovery alone. It also means ensuring people have access to reliable information, meaningful support and a stronger voice in the decisions that affect their lives. Every story reinforces the importance of listening to our community and ensuring its experiences help shape research, services and advocacy.
Connecting with decision-makers and our sector
Earlier this month, Vesna and I travelled to Canberra for the Parliamentary Friends Group for Eye Health and Vision Care, joined by Retina Australia Board members Joshua Ginpil and Stephen Miners.
We welcomed parliamentarians and colleagues from across the eye health and vision care sector to our stand and shared more about Retina Australia’s work across research, information, support and advocacy.
Our advocacy also extends to the systems people must navigate to receive an accurate diagnosis and appropriate care. In our submission to the Inquiry into Access to and Affordability of Medical Specialists in Australia, we highlighted the challenges facing people with rare conditions, including inherited retinal diseases. Our focus was on what happens before the correct specialist pathway has been identified, and when the diagnostic test needed to confirm a condition falls outside Medicare coverage.
For people and families already navigating the uncertainty of a rare diagnosis, these gaps can create additional financial and practical barriers. We believe access to appropriate specialist care and diagnostic testing deserves greater attention, particularly where an accurate diagnosis can inform treatment options, family planning and access to research opportunities.
Supporting every donation
I also spoke with journalists from the ABC and Payday News about the implications of changes to credit card surcharges for charities.
Every donation to Retina Australia makes a difference. With processing fees of approximately $1.70 on a $100 credit card donation, we want to ensure as much of every gift as possible goes towards supporting research, information, advocacy and support for people living with inherited retinal disease.
These changes are prompting charities across the sector to review their donation processes and explore ways to reduce transaction costs while keeping giving simple and accessible for supporters. For Retina Australia, it reinforces the importance of being responsible stewards of every dollar entrusted to us.
The Board has also formally approved Retina Australia’s Industry Engagement Principles, which will guide how we engage with industry, including pharmaceutical, biotechnology, medical device and diagnostic companies. These relationships are important in advancing research, improving access to information and raising awareness of developments that may affect people living with inherited retinal disease.
The principles establish a clear framework for our engagement, with expectations around transparency, independence, ethical conduct and alignment with our mission and the interests of our community. They will help ensure our engagement with industry is constructive, appropriately managed and focused on improving outcomes for people living with inherited retinal disease.
We look forward to formally launching the principles soon.
Building the foundations for greater impact
Our work with Equitable Philanthropy continues as we translate our strategic priorities into a more focused and sustainable approach to fundraising. This includes strengthening our Case for Support, clarifying the projects where we can make the greatest difference, and developing a fundraising strategy that builds our capacity to deliver meaningful and lasting impact for the inherited retinal disease community.
Building a more sustainable organisation is not an end in itself. It is what enables Retina Australia to invest in research, expand support for our community, improve access to information and advocate more effectively for people living with inherited retinal disease.
Eyes on the Horizon: a new opportunity to make a difference
I’m pleased to share the official launch of Inspired Adventures’ Eyes on the Horizon Walk, taking place from 9–11 April 2027 along Victoria’s spectacular Great Ocean Road.
Over three days, participants will have the opportunity to take on a memorable challenge while raising funds and awareness for Retina Australia. Initiatives like this bring people together around a shared purpose and help turn community enthusiasm into practical support for our work.
We look forward to sharing more information about the walk and how you can get involved.
Looking ahead
As we look ahead, our focus remains on turning our strategic priorities into meaningful outcomes for the inherited retinal disease community. From investing in research and strengthening access to information and support, to advocating for better pathways to diagnosis and care, we are also building the financial sustainability and organisational capacity needed to deliver lasting impact.
Thank you to our members, researchers, donors, volunteers and supporters. Your commitment helps us build a stronger Retina Australia and move closer to a future where inherited retinal disease no longer leads to blindness.
Warm regards,
Jono Brookes
Chief Executive Officer
Retina Australia
https://retinaaustralia.com.au/october-2026-ceo-update/
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