25 years ago, the outlook for macular disease patients was bleak. A lot has changed in the past quarter century, thanks in large part to a community member and two dedicated ophthalmologists who established a dedicated, patient-centred organisation that would become Macular Disease Foundation Australia.

How’s macula? your

Must do test and make Have an eye sure my macula is checked

vision and is the leading cause of blindness Macular Degeneration takes away central without knowing. Early detection is vital. in Australia. You can have the early signs How’s your macula?

Macular Disease Foundation Australia (MDFA) is celebrating a 25-year milestone. Prior to the early 2000s, macular disease was largely unrecognised in Australia. Public awareness of early warning signs was low, opportunities for timely detection were missed, and treatments were limited and largely ineffective. Many people sought help only after significant and permanent vision loss had occurred.

A community member living with macular disease recognised the urgent need for a dedicated, patient-centred organisation – one that could support individuals and carers, promote prevention through lifestyle and early detection, and engage governments to recognise macular disease as a national health priority.

In response, leading retinal specialists Dr Paul Beaumont AM and Professor Paul Mitchell AO founded the Macular Degeneration Foundation in 2001 as a not-for-profit with a clear vision: to reduce the impact of macular disease in Australia.

Check My Macula One minute is all it takes to check your risks for macular disease. Get started at or call 1800 111 709.

Instructions: Instructions: 1. Do not remove glasses or 1. Do not remove glasses or 1800 111 709 1800 111 709 2. Hold grid at normal reading 3. Fully cover one eye and 2. Hold grid at normal reading 3. Fully cover one eye and test for changes in your vision and symptoms test for changes in your vision and symptoms The Amsler Grid should be used regularly to The Amsler Grid should be used regularly to of macular degeneration. It should not be of macular degeneration. It should not be 4. Repeat with the other eye contact lenses normally the uncovered eye eye exams. Contact your optometrist or to check for changes to vision between 4. Repeat with the other eye contact lenses normally used for reading distance in a well lit room used for reading distance in a well lit room eye exams. Contact your optometrist or to check for changes to vision between ophthalmologist urgently if you notice The Amsler Grid should be used daily The Amsler Grid should be used daily focus on the centre dot with the uncovered eye focus on the centre dot with ophthalmologist urgently if you notice depended upon for diagnosis. depended upon for diagnosis. any changes. any changes.

information kit and Amsler grid today 1800 111 709 Order a FREE

Macular disease is the leading cause of vision loss and blindness in Australia

• Wear glasses or contact lenses normally used for reading Instructions: • Hold grid at normal reading distance (~30cm) in a Instructions: • Wear glasses or contact lenses normally used for reading • Hold grid at normal reading distance (~30cm) in a • Fully cover one eye and focus on the centre dot • While looking at the centre dot, look for: • Repeat each eye • Fully cover one eye and focus on the centre dot • While looking at the centre dot, look for: • Repeat each eye well-lit room well-lit room – Wavy or bent lines – Dark or blurred patches – Empty spaces – Wavy or bent lines – Dark or blurred patches – Empty spaces National Helpline: 1800 111 709 National Helpline: 1800 111 709 blurred or missing blurred or missing reverse side for reverse side for patches, this may patches, this may are wavy, broken are wavy, broken If the grid lines If the grid lines be a symptom be a symptom degeneration. degeneration. or if there are or if there are what to do. what to do. Please see Please see or distorted, or distorted, of macular of macular

If you’re over 50 Have an eye test and macula check every two years. Never ignore any changes in your vision. Eat an eye friendly diet and maintain a healthy lifestyle. Know your direct family eye health history, you could be at risk.

From the outset, the Foundation positioned itself as an independent, evidence-based source of information, education, support, and advocacy.

“When the Foundation was established 25 years ago... there were no effective treatments and limited public awareness,” Dr Beaumont recalled. “Age-related macular degeneration (AMD) was the commonest cause of blindness in Australia, yet few people had heard of it.

“As an ophthalmologist, I saw how profoundly macular disease affected people and their families. Patients needed far more than clinical care alone. Yet beyond the clinic, opportunities for education and support were scarce.”

Another early advocate for the cause was prominent media identity Ita Buttrose AC OBE, appointed Patron in 2005. She has remained a tireless advocate for the macular disease community ever since, playing a central role in raising awareness of macular disease and its impact.

“Twenty-five years is long enough to change lives – and Macular Disease Foundation Australia has done exactly that,” said Ms Buttrose.

commissioned YouGov polling found that among Australians 50+:

time, breakthroughs in diagnostic imaging now allow clinicians to detect disease earlier, monitor it more precisely, and provide tailored treatments. These tools have fundamentally changed the way macular disease is managed.

• 89% were aware of macular degeneration,

“My father, Charles, was an avid reader and a former journalist. Newspapers connected him to the world, and he began each day immersed in words and ideas.

• 82% knew it affected the eyes, and

• 86% reported having had a macula check in the previous two years.

“As a researcher, I’m excited by the growing momentum in scientific discovery, particularly in areas of high unmet need such as geographic atrophy. Promising therapies – including complement inhibitors, gene therapies, and stem cell approaches – are expanding the global research landscape. Emerging technologies, including artificial intelligence, are opening new possibilities, helping researchers analyse complex data, predict disease progression, and refine treatment strategies with greater accuracy than ever before,” he said.

“As AMD gradually robbed him of his central vision, that connection faded. Eventually, he lost the ability to read, recognise faces, or follow the news – losses that were devastating in themselves, and even more so as he also lived with vascular dementia. At that time, effective treatments for neovascular AMD were not available, and his vision loss was irreversible.

SUPPORTING EARLY INTERVENTION AND TREATMENT OUTCOMES Professor Mark Gillies from Save Sight Institute, University of Sydney has described VEGF inhibitors as “one of the greatest advances ever in ophthalmology”.

“My Uncle Gerald’s story, however, tells a different and far more hopeful chapter. Diagnosed early and treated promptly, he received regular eye injections that preserved his sight. Uncle Gerald continued to live independently, write, stay active, and – most importantly – see the faces of his family. His experience demonstrates what is possible when awareness, early detection, and access to treatment come together. Sadly, Uncle Gerald died in February this year when he was 102.

“From the outset, the Foundation positioned itself as an independent, evidence-based source of information, education, support, and advocacy”

COMPREHENSIVE SUPPORT BEYOND THE CLINIC Over the 25 years of its existence, MDFA has supported tens of thousands of people to better understand and live more confidently with their diagnosis, including Clare James,* diagnosed with AMD in 2020.

“I was very surprised and somewhat shocked about the diagnosis, but I was fortunate to have some knowledge of what drusen are when the ophthalmologist mentioned them.

“These two stories – brothers affected by the same disease – capture the profound change that has occurred in just one generation, and why the work of MDFA matters so deeply,” Ms Buttrose said.

“I felt relieved by the knowledge that I was supported, and would continue to be supported, by the Foundation in my eyesight journey. This has been a great comfort to me and continues to be.”

A NATIONAL TRANSFORMATION IN AWARENESS AND EARLY DETECTION As the first anti-VEGF treatments for neovascular AMD (nAMD) were approaching clinical use in the mid-2000s, one thing was clear: medical breakthroughs alone would not be sufficient. Without public awareness, rapid diagnosis, equitable access to treatment, and long-term adherence, the benefits of these therapies would not be realised at a population level.

“Before they arrived in 2006, retina specialists spent a lot of time just filling out blindness registration forms for people with macular degeneration. Laser treatment delayed loss of vision for a few years for at most one in 10.”

Ms James’ experience reflects MDFA’s comprehensive national approach to providing information and support. Through its helpline, website, newsletters and extensive publications, MDFA provides non-clinical guidance on disease management, treatment pathways, lifestyle changes, low vision support, government entitlements, and emotional wellbeing.

Australia is now regarded as a global leader in nAMD outcomes, with studies showing superior long-term visual results compared with many other countries. This success is attributed to a uniquely collaborative model involving government, clinicians, industry, and MDFA – ensuring early detection, rapid referral, ongoing treatment adherence, and patient support.

One of MDFA’s most significant contributions has been transforming public awareness of macular disease. In 2007, YouGov national polling, commissioned by MDFA, revealed alarmingly low awareness: only 58% of people aged over 50 had heard of macular degeneration, just 45% understood it affected the eyes, and only 33% had knowingly had an eye test with a macula check in the previous two years.

Since 2006, it has delivered more than 1,900 face-to-face education sessions, reaching almost 90,000 Australians. Over 95% of participants rate these sessions as good or excellent, with most reporting increased understanding and intent to seek regular eye care.

Internationally renowned as a champion of ophthalmic research, MDFA’s co-Founder and current National Research Advisor Professor Paul Mitchell AO is Director of the Centre for Vision Research, Westmead Millennium Institute. “While there is currently no cure, the past 25 years have seen remarkable progress that has transformed outcomes for many people, and reshaped what is possible,” Prof Mitchell said.

MDFA also partnered with experts to conduct research that revealed significant gaps in support between clinical visits.

As a result, MDFA launched sustained national awareness campaigns, including television, radio, print, community education, and its flagship Macular Degeneration Awareness Week, which would later expand to Macula Month. The results were transformative. By 2014, MDFA’s

The Eye Connect service was designed in response – an Australia-first service for people living with any stage of AMD or diabetes related eye conditions. It offers free, tailored support based on diagnosis, treatment, vision status, and daily life impact.

“Advances in treatments for conditions, such as neovascular AMD, have dramatically improved vision outcomes. At the same