2 days ago
May marked my first 90 days as CEO of Retina Australia, an important milestone and an opportunity to reflect.
The first 90 days in any leadership role are often focused on listening, learning, building relationships and understanding where an organisation can have the greatest impact. Over this time, I have had the privilege of talking with members of our community, researchers, clinicians, sector leaders and supporters, all of whom have reinforced both the importance of Retina Australia’s work and the extraordinary resilience and passion that exists across the inherited retinal disease (IRD) community.
I am incredibly excited by the opportunities ahead for Retina Australia, particularly at a time when progress in inherited retinal disease research is accelerating. At the same time, I am also very conscious of our responsibility to continue delivering meaningful outcomes for our community through research, advocacy, awareness and support.
A key milestone during the month was Retina Australia’s annual Board Strategy & Planning Day, held on Saturday 2 May. The session provided an important opportunity to sharpen our focus, align priorities, and build a framework to transition strategy into delivery. Discussions centred on strengthening Retina Australia’s long-term sustainability, increasing our impact across research, advocacy and community engagement, and ensuring we are well positioned to support the evolving needs of the IRD community.
Throughout May, I was honoured to be invited as a guest speaker at the Next Sense 6th Annual Childhood Vision Forum, where I presented on the progress being made in inherited retinal disease research.
The presentation provided an overview of Retina Australia’s role in supporting research, advocacy and community engagement, before exploring the current IRD research landscape. It highlighted Retina Australia’s longstanding investment in research through our grants program, alongside key areas of emerging therapeutic development including gene therapies, cell-based therapies, retinal prostheses and pharmaceutical approaches. The session also explored the stages of clinical trials and the growing number of IRD research studies and clinical trials underway both in Australia and internationally.
I was also fortunate to attend Cerulea Clinical Trials’ second birthday celebration, recognising their remarkable milestone of supporting more than 200 clinical trials. Events such as these highlight the growing momentum across medical research and the critical role clinical trials play in advancing new therapies and improving patient outcomes.
Importantly, inherited retinal diseases are no longer considered beyond the reach of treatment. Across the world, research is accelerating, with advances in gene therapy, genetic diagnostics, registries and clinical trials continuing to reshape what may be possible for people and families impacted by IRDs. While significant challenges remain, there is genuine reason for hope.
At the same time, it is important that we continue to raise awareness of the broader impact of inherited retinal diseases, not only on vision, but on individuals, families and society more broadly.
Recent international and Australian analyses continue to highlight the significant socioeconomic burden associated with IRDs. Research suggests the estimated lifetime impact of IRDs in Australia may be as high as $5.2 million per person, reflecting the early onset and lifelong progression of these conditions. Importantly, the majority of this impact sits outside the health system, including reduced workforce participation, informal care, lost productivity and reliance on broader support systems.
As the leading cause of blindness in working-age adults, IRDs can significantly affect employment, independence and participation across the life course. The impact on carers and families is also substantial and often under recognised. These findings reinforce the importance of continued investment in research, early intervention, support services and emerging therapies, and the need to consider the broader social and economic value of progress in IRD research.
This month also marks the launch of Retina Australia’s 2026 Annual Appeal.
This year’s campaign theme, “Backing Progress. Accelerating Hope”, reflects the momentum now emerging across inherited retinal disease research and the vital role our community continues to play in supporting that progress.
Since 1989, Retina Australia has invested more than $6.8 million into over 150 research projects, helping support discoveries that are changing the future of inherited retinal disease. Our appeal message, “Backing the researchers turning hope into sight”, recognises the extraordinary work of researchers, clinicians and research participants working to accelerate the development of future treatments.
As more is learned about IRDs, progress in research and clinical trials continues to provide hope for individuals and families affected by inherited blindness. Every donation helps Retina Australia continue supporting research, advocacy, awareness and community connection.
I encourage all members and supporters, if they are able, to consider supporting this year’s appeal and helping us continue to accelerate progress toward a future without inherited blindness.
Link to Campaign: https://retinaaustralia.com.au/help-us/annual-appeal/
Thank you, as always, for your ongoing support, advocacy and belief in the work we do together.
Warm regards,
Jono
