Our Vision is for a world without inherited blindness
Retina Australia is a not-for-profit charity. Our mission is a world without inherited
blindness. There are over 15,000 people in Australia at the moment that have been diagnosed with an inherited retinal disease, so we try and help providing information, raise money for researchers and doing what we can to make life easier for people with an inherited retinal disease. I have retinitis pigmentosa. The progression of my vision loss has been gradual over 60 years. I was diagnosed at five years of age, and now at 69, are totally blind.
So my name is Jane Cherry. I’m on the board of Retina Australia, and I have inherited retinal disease called retinitis pigmentosa. It sort of manifests mostly as the tunnel vision. Over time, that tunnel just gets narrow and narrower. It takes a long time for my eyes to adjust, going from dark to light or light to dark. Oh, it mostly affects my night vision, so just trying to navigate, you know, at night time or in dimly lit bars and restaurants is really difficult. I’ve also had to stop driving. So little things like that just sort of start to make you feel just a little bit smaller.
So I found Retina Australia quite early on after I was diagnosed, because I didn’t know anyone else with the condition, I was just looking for someone else with that same shared experience. Cause I was feeling quite isolated, so I just was trying to find some community to connect into, and I found that with Retina Australia. So I became a member, which got me access to all these webinars that they did on different, you know, therapies and things that were going on. I joined their fundraising activities. So through that I met some of the team and I found this really, really welcoming and supportive community that’s really nice to be part of.
Retina Australia, since 1983, has funded over 6 million worth of research, all to do with inherited retinal diseases.
I’ve been involved with Retina Australia for many years now, both as a recipient of funding. So when people generously donate to Retina Australia it supports programs like mine so that we can get this research happening and direct it to patients. I’ve also really appreciated being able to work with Retina Australia to get experiences from people that have these conditions so that people can tell me what’s interesting to them and what research we should be focusing on. And so that’s really one of the big strengths of Retina Australia, is this direct communication with the research landscape. Discovering new treatments for inherited retinal diseases is a long process. So we have to take it from basic science in the laboratory through natural history studies of people that have inherited diseases and then straight to clinical trials. And so it’s a really long process which also means an expensive process. So support from donors like at Retina Australia really helps us to achieve our goals of finding new treatments for people that have these conditions.
What gives me hope in the space of research is that researchers throughout Australia and the world are working very collaboratively. They’re working on all sorts of projects: gene therapies, stem cells, et cetera.
So I think most exciting part about the research happening is just leaps and bounds being made all the time. And, you know, even if it’s not for me, the right breakthrough isn’t there in time for me, it will be for the next generation.
I encourage everyone to be a supporter of Retina Australia. This can be done by being a volunteer, a donor, a member or even running a fundraising event. Please check our website for further details.
Our Mission is to support people affected by inherited retinal diseases.
Retina Australia is an independent, charitable organisation dedicated to supporting people affected by inherited retinal diseases. We are the only national membership organisation focused on, and solely on, inherited retinal diseases.
Through the funding of the best Australian medical research, Retina Australia aims to promote early detection, discover preventions, advance treatments, with the ultimate goal to progress towards unlocking cures into inherited retinal diseases.
We also support our inherited retinal diseases community through the provision of information and peer support services.
Our Values guide our actions in everything we do.
We strive to deliver the best outcomes through scientific quality, the highest of standards, positivity, learning and responsiveness
We act with honesty, transparency, accountability, and reliability
We welcome and treat all people with dignity, equality, understanding and courtesy
We partner to maximise results for people affected by inherited retinal diseases
A positive impact on people affected by inherited retinal diseases is the focus of everything we do
Strategic Plan 2023-2025
There are 5 strategic pillars to our strategic plan.
To fund high quality Australian research into the detection, better treatments, and prevention, with the hope of progression towards cures into inherited retinal diseases (IRDs)
To be an accurate, accessible and comprehensive source of information on IRDs
To facilitate the development of meaningful social connections for people with IRDs, and their families and carers
To ensure the ongoing viability of Retina Australia and therefore its ability to continue to support and positively impact the IRD community
To continuously improve and strengthen organisational governance
Originally known as the Australian Retinitis Pigmentosa Association, Retina Australia was incorporated in 1983.
It was formed after founding member, Bob Daniels, returned from the International Retinitis Pigmentosa Association Congress in Baltimore, full of enthusiasm and determined to instigate Australian research to cure eye diseases previously placed in the ‘too hard basket’.
It was made up of the State based bodies from Western Australia, South Australia, Victoria and New South Wales. The aim was to combine funds raised by the States and allocate them to Australian medical researchers in the field of inherited eye disease.
After the International Retinitis Pigmentosa Association became Retina International and broadened its scope to focus on not just Retinitis Pigmentosa but all inherited retinal diseases, the Australian Retinitis Pigmentosa Association followed suit and the organisation was renamed Retina Australia.
Retina Australia became a single, fully national body with a national office in Melbourne. A new Constitution governs the national body.
In October 2022, Retina Australia welcomed its inaugural Chief Executive Officer, Julia Hall.
October 2023 will celebrate Retina Australia’s 40 years since incorporation, advancing medical research and providing information and support for people affected with inherited retinal diseases.
Over the years we have funded research into areas including gene therapy, stem cell therapy, artificial prostheses, and the psychological or sociological aspects of living with an inherited retinal disease. Our members have also contributed to research through personal interviews and non-invasive testing.
Retina Australia is proud to have been an early contributor to the Australian Bionic Eye project. With the help of a grant of $40,000 two trained engineers developed the initial prototype of the bionic eyes. These researchers are currently involved in refining and advancing their work with funding from the Australian government.
Retina Australia also continues to fund the Australian Inherited Retinal Disease Register and DNA Bank. This data bank, operating since 1984, is regarded as essential to the work of finding a cure or treatment of inherited retinal disease.