28 August, 2026
August has reinforced for me that one of Retina Australia’s greatest strengths is our ability to bring together people, expertise and resources around shared priorities to create greater impact. Whether connecting our community with research and emerging treatments, bringing organisations together around peer support, or building relationships with philanthropic, industry and international organisations, our role is increasingly about turning these relationships into meaningful opportunities that strengthen our community, the organisations we work with and the broader IRD sector.
Connecting beyond our borders
Vesna and I met with the Foundation Fighting Blindness and Retina International to explore opportunities for greater collaboration internationally.
The pace of research and development in IRD is increasingly global. Strong international connections are important so our community can benefit from developments in research, clinical trials, emerging treatments and patient advocacy, while ensuring the Australian experience is represented internationally.
We will continue to explore these opportunities through our Beyond Our Borders work.
Learning from the Global Impact Summit
I attended the Global Impact Summit in Sydney, a cross-sector gathering bringing together leaders from philanthropy, business, social enterprise and the not-for-profit sector to explore how we can work differently to create meaningful impact.
A key insight for me was the importance of asking what problem we are uniquely placed to solve? Rather than simply asking how we can garner support.
The Summit reinforced that the strongest organisations create value before asking for support. They build relationships around shared purpose, understand what each organisation brings to the table and look for opportunities to create mutual value. For Retina Australia, this means being clear about the value we create for our community and the broader IRD sector, while also understanding the value we can create for the organisations we work with.
This thinking is informing our Strategic Plan, particularly our priorities around Sustainability, Research and Support. Sustainable fundraising should ultimately be one of the ways we enable greater impact — not the objective in itself. Our focus needs to be on creating value, building trust and demonstrating that Retina Australia is well placed to contribute to solving important problems for people living with inherited retinal disease.
Responsible industry engagement
We have commenced development of an Industry Engagement Principles policy for Retina Australia.
As new therapies move from research towards clinical trials and, potentially, becoming available to patients, our relationships with industry will become increasingly important. Our Industry Engagement Principles will provide Retina Australia a clear framework for engaging constructively with industry while maintaining our independence, transparency and focus on the interests of people living with IRD.
This is an important piece of work as we build stronger relationships across the research, clinical and industry ecosystem.
Building our philanthropic capability
Our work with Equitable Philanthropy has progressed with the development of Due Diligence and Fundraising Readiness Reports. The due diligence process is important in providing confidence to potential funders that Retina Australia is a well-governed, credible and capable organisation, while the Fundraising Readiness Report is informing the development of our Fundraising Strategy.
The process has reinforced that successful philanthropy starts well before asking for support, with a compelling case for change, clear outcomes and confidence that an organisation can deliver them.
Our next step will be to finalise our overall Case for Support, including three priority projects. These will provide tangible propositions around which we can build philanthropic conversations.
The aim is simple: to provide potential investors a clear understanding of the problem, the opportunity, the difference their investment can make and why Retina Australia is well placed to deliver that impact.
From donor support to impact
In my July report, I thanked our donors for their generous support. As we build our fundraising maturity, I want us to become increasingly focused not only on the support we receive, but on what that support makes possible.
Our work with Equitable Philanthropy is helping us build the foundations for a more strategic and sustainable approach to fundraising. This includes being clearer about the problems we are seeking to address, the value Retina Australia creates, the outcomes we are working towards and how we can demonstrate the difference our investment makes.
Fundraising creates the capacity to invest in research, strengthen peer support, improve access to trusted information and advocate for better outcomes for people living with IRD.
As our fundraising maturity develops, we also need to become better at telling this story — showing our community and supporters the connection between their support, what we do with it and the difference it makes. The goal is to build lasting relationships based on shared purpose and demonstrated value, with sustainable fundraising becoming an outcome of that approach.
Connecting people through peer support
I also want to provide a fuller update on the peer support work referenced in my July report.
In late June and early July, we submitted two grant applications to the Department of Health, in collaboration with Inherited Disorders Foundation of Australia (IDFA), Mito Foundation and Genetic Alliance Australia.
The applications relate to:
Peer Support for Rare and Chronic Conditions; and
Connect Support Pathways – Disability Peer Support Connections Program.
These submissions reflect the collaborative approach we are taking to developing peer support. Rather than each organisation developing separate pathways, we are exploring how we can work together to make peer support more connected and accessible for people living with rare and chronic conditions and disability.
This work is closely aligned with our strategic priority to develop a sustainable peer support program for our community.
Making IRD visible in the broader vision conversation
Vesna and I also met with Vision 2020 Australia to discuss the forthcoming Economic Impact of Vision Loss and Blindness report being developed with UNSW.
We have expressed interest in Retina Australia being represented on the report’s advisory committee. This is important because the experience and economic impact of inherited retinal disease need to be visible in broader discussions about vision loss and blindness in Australia.
A stronger evidence base will also support our advocacy with government and other decision-makers, particularly around the value of early diagnosis, appropriate support, research and emerging treatments.
Keeping lived experience at the centre
I was pleased to attend the launch of Suzy Zail’s book, A New Kind of Beautiful, attended by many members of our community.
The evening was a powerful reminder of the importance of lived experience and storytelling in making the reality of progressive vision loss better understood.
Keeping these voices at the centre of our advocacy and communications remains fundamental to our work.
Looking ahead: Inspired Adventures
We are also excited to be embarking on our first Inspired Adventures event, a Great Ocean Road challenge in May 2027.
It will be a new way for our community and supporters to come together, take on a challenge and raise funds for Retina Australia.
More information will follow as plans develop.
Warm regards,
Jono
https://retinaaustralia.com.au/ceo-message-august-2026/
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