Panel members, from left: Associate Professor Anai Gonzalez Cordero, Professor Lisa Keay, Jean Kittson, The Hon Gillian Skinner, Dr Paul Beaumont, and Ita Buttrose.

Macular Disease Foundation Australia (MDFA) has celebrated 25 years of changing the landscape of macular disease care in Australia.

At an event hosted at the New South Wales State Library in late March, supporters, patients, carers and advocates gathered to mark the significant milestone and impressive achievements of this small but highly effective national organisation.

The celebration commenced with a powerful video featuring the prominent British actress Dame Judi Dench, along with macular disease community members and their families, speaking about the impact the disease has had on their quality of life and the hope that treatment has given them.

At the heart of the occasion was a landmark oration, named in honour of the Foundation’s patron, Ita Buttrose AC OBE, delivered by Dr Paul Beaumont AM, the Sydney-based ophthalmologist and MDFA founder.

The event, which also featured a response from Ms Buttrose and an expert panel discussion, was introduced by MDFA Chief Executive Officer Dr Kathy Chapman, who framed the anniversary as a celebration of collective purpose.

“If there’s one thread that weaves through our work across a quarter of a century, it’s community,” Dr Chapman told the audience. “It is people and the collective strength of individuals who believe in our mission, and who are determined to make a difference and save sight.”

THE MOMENT THAT CHANGED EVERYTHING

Dr Beaumont opened the oration by acknowledging those living with macular disease before turning to the formative experience that has defined his entire medical philosophy: a chance encounter under the mentorship of the late Professor Fred Hollows.

“I was a young doctor working under the late Prof Fred Hollows,” Dr Beaumont recalled, “and he pointed at a 23-year-old man who was almost totally blind with a white stick.” When a young Dr Beaumont provided his assessment of the patient, Prof Hollows’ response was withering. “I didn’t ask if he was blind,” Dr Hollows reportedly said. “I asked why he’s blind. If a young man totally blind comes in and you haven’t thought about what’s causing it or what you can do about it, you don’t belong in this profession.”

That rebuke, Dr Beaumont explained, fundamentally shaped his approach to medicine – and ultimately to macular disease. “I couldn’t accept vision loss as just one of those things. I had to ask why. And what can be done?” Dr Beaumont said Prof Hollows’ words have influenced his entire career and informed the very founding philosophy of MDFA.

FROM STORAGE ROOM TO NATIONAL MOVEMENT

Dr Beaumont painted a stark picture of what macular disease care looked like before the Foundation’s establishment. Fewer than 2% of Australians had any awareness of the condition. Patients were handed a diagnosis with no treatment, no education, and no support – left, as Dr Beaumont put it, “isolated with a fear of total black blindness”.

The catalyst for change came not from a boardroom but from a patient. A determined woman – described by Dr Beaumont as “strong, extraordinary, capable” – approached him with a simple proposal to provide support for people with a macular disease beyond the consulting room. She had already engaged a solicitor and drafted a constitution. The Foundation needed to exist, she said, because the gap in care was too great.

“I realised immediately there wasn’t a choice,” Dr Beaumont said. “It wasn’t something I could dismiss. I didn’t know if we could succeed, but we certainly had to try.”

And so, in 2001, working from a table in Dr Beaumont’s storage area with no funding and no roadmap, the Macular Degeneration Foundation, later to become Macular Disease Foundation Australia, was born. “We didn’t let people know we were small,” Dr Beaumont noted. “We spoke with a loud voice.”

POLICY BATTLES AND PIONEERING VICTORIES

Over the following years, MDFA pursued government access with persistence. Dr Beaumont described sitting in meetings with federal ministers who had never heard of – let alone could pronounce – the condition, and others who told him bluntly they had “bigger priorities”. Despite this, alongside patients, the Foundation lobbied relentlessly for recognition and for access to emerging treatments.

The arrival of photodynamic therapy and, later, sight-saving anti-VEGF injections provided the impetus for even more intense advocacy. Dr Beaumont recounted presenting unpublished clinical data to the Department of Health, making the case that Australia needed to act with expedience. The result was historic: Australia became the first country in the world to subsidise anti-VEGF treatment without restriction, preserving the sight of thousands of Australians.

Dr Beaumont said this achievement, and others are the “sorts of things you cannot do unless you’ve got a foundation”.

NORMA’S STORY: WHAT IT’S ALL ABOUT

Among the most moving passages of Dr Beaumont’s oration was the story of his patient Norma Tory – a woman who, at 100 years old, celebrated her birthday in his clinic with champagne before her injection. When Ms Tory became too immobile to attend appointments, Dr Beaumont refused to let her sight deteriorate. Inspired, he said, by the ghost of Fred Hollows, he continued treating her at her care facility until she was 104.

“She read two books a week,” Dr Beaumont said. “She watched television. She recognised the faces of her family. Norma stopped reading not because she went blind, but because a couple of weeks before the end, she couldn’t hold the book.” As in those early days of the Foundation’s existence, his voice was loud and clear: “This story about Norma is what it’s all about. She not only lived longer, she lived better – with dignity, and curiosity, and light.”

TRIBUTE TO A PATRON

Central to the oration was Dr Beaumont’s tribute to Ms Buttrose, whom he described as bringing “stature to the cause” from the moment she accepted the role of patron without hesitation. Ms Buttrose’s connection to macular disease, Dr Beaumont noted, is deeply personal – she watched her father, Charles, lose his ability to read and recognise faces at a time when no effective treatment existed. Her Uncle Gerald, by contrast, serves as a symbol of progress: diagnosed early, treated consistently, he lived independently to the age of 102.

Ita Buttrose

Dr Paul Beaumont

Describing Ms Buttrose as “awesome” he said, “Ita always speaks with clarity and compassion. We owe Ita an enormous depth of gratitude.”

Ms Buttrose’s reply was characteristically gracious and poignant. She spoke fondly of her Uncle Gerald, who was “engaged with the world, still reading, still recognising faces, still living fully”, before passing away at 102 while listening to opera.

“His life and the quality of those later years was not an accident,” Ms Buttrose told Dr Beaumont. “It was the result of progress. Progress that you, Paul, helped make possible.”

Ms Buttrose praised Dr Beaumont’s refusal to accept blindness as inevitable and his insistence on asking the question of why. “You have helped bring macular disease out of the shadows and into the national conversation,” she said. “You have challenged government, changed policy, and most importantly, changed outcomes for thousands of Australians.”

THE ROAD AHEAD

Despite remarkable progress – awareness of macular disease has risen from under 2% to approximately 90% of Australians. MDFA has committed nearly AU$7 million to research, which Dr Beaumont said made it the largest nongovernment funder of macular disease research in the country. But he was resolute in stating that the work was far from finished.

“Macular disease remains the leading cause of blindness in Australia,” he said. “We will never be finished. Not until there’s a cure and no one faces vision loss alone.”

And Dr Chapman reiterated the Foundation’s commitment to find a cure. Thanking the audience for their ongoing support she said the goal had been set to raise AU$1 million this year alone, and $3 million per year by 2030, all of which will contribute to this ongoing quest.