Macular Disease Foundation Australia’s (MDFA) annual meeting, held at the NSW State Library and attended by eye care professionals, people living with macular disease and their supporters, drew attention to the growing challenges facing macular disease management, while simultaneously paying tribute to MDFA’s pioneering work, and its community of supporters. 

MDFA Chair Graeme Head AO presented a stark overview of the global and national macular disease landscape. Current worldwide statistics reveal over 96 million people are living with macular disease, a figure projected to escalate to nearly 300 million by 2040. In Australia, approximately 1.9 million individuals are already affected, with predictions suggesting more than two million Australians will experience some form of macular disease by 2030.

Painting a picture of the impact of macular disease on individuals, Mr Head stated, “Imagine not being able to read your favourite book or drive to the shops, or even see the faces of your loved ones”. His presentation underscored the critical need for a multifaceted approach to addressing macular disease, which includes increasing research funding, developing advanced treatments, ensuring affordable healthcare, supporting technological innovations, and providing robust community-based support services.

MDFA faces significant financial challenges, requiring six dollars of fundraising for every government dollar received. This economic reality highlights the crucial role of community donations in supporting early career research grants and driving innovative research.

PROGRESS IN GENETIC DIAGNOSIS

Dr Alexis (Ceecee) Britten-Jones from the University of Melbourne’s Optometry and Vision Science research team provided an update on her work exploring the genetic diagnosis of macular diseases. Her research tackles complex diagnostic challenges brought about because inherited retinal diseases, which are rare and typically affect younger individuals, can sometimes appear remarkably similar to age-related macular degeneration, especially when symptoms manifest later in life.

Dr Britten-Jones explained the importance in differentiating the genetic associations for both.

“In inherited macular diseases, usually there’s one genetic cause in each affected person,” Dr Britten-Jones explained. “Conversely, age-related macular degeneration involves multiple genes each contributing as risk factors, rather than directly causing the disease.”

A significant finding was the diagnostic disparity between early and late-onset inherited macular diseases. “The rate of diagnosis for late-onset inherited macular diseases is about three times less compared to earlier onset,” Dr Britten-Jones said, highlighting the critical need for continued research and advocacy.

From back left: Dr Ceecee Britten-Jones, Dr Paul Beaumont, Ita Buttrose, and Dr Kathy Chapman.

HONOURING DR PAUL BEAUMONT

MDFA’s Patron, Ita Buttrose AC OBE, delivered a heartfelt tribute to Dr Paul Beaumont, the organisation’s founder. Ms Buttrose spoke of Dr Beaumont’s transformative work since establishing the Foundation in 2001, positioning it as a leader in macular disease support, research, and advocacy.

“What sets him apart is not just his medical skill, but his genuine commitment to ensuring that patients receive the best care possible,” Ms Buttrose noted. An example she gave was Dr Beautmont’s commitment to providing eye injections to a now 104-year-old patient in her nursing home to help maintain vision in one eye.

Ms Buttrose highlighted Dr Beaumont’s significant contributions beyond clinical work, including serving as the New South Wales chair of the Royal Australian and New Zealand College of Ophthalmologists (RANZCO), and positioning MDFA as the largest non-government funder of macular disease research in Australia.

The meeting concluded with a powerful call to action from CEO Dr Kathy Chapman. She reminded the audience that addressing macular disease requires collective effort and unwavering commitment to supporting those affected. The research presented by Dr BrittenJones underscores the pivotal role of precision medicine in ophthalmology, offering hope for more accurate diagnoses and personalised treatment strategies, she said.

Dr Chapman reiterated the MDFA’s commitment to remaining at the forefront of research, support, and advocacy, and to working to improve outcomes for patients and advance understanding of these complex conditions.