When Brian Macafee walked into a doctor's appointment in 2015, he never imagined that life would change so suddenly. A towering figure at 6'3", Brian was a man known for his strength, humour and love for family. After a lifetime of hard work and global adventures collecting antiques for his Geelong business, he was looking forward to retirement with his wife Heather, surrounded by children and grandchildren.

But a subtle weakness in his shoulder and neck marked the beginning of something far more serious. After being referred to Barwon Health neurologist Professor Paul Talman, Brian was diagnosed with Motor Neurone Disease (MND) - a terminal condition that progressively robs the body of its ability to move, speak, swallow, and breathe.

The news hit hard. Brian was 68. He'd been looking forward to slowing down. Instead, he was forced to accelerate into a fight for life.

MND, often called 'The Beast', is relentless. It leaves the mind alert while trapping it inside a failing body. For Brian and his family, the diagnosis also came with a confronting financial burden. As someone over the age of 65, Brian was ineligible for NDIS support. The cost of vital equipment - like a $35,000 powered wheelchair, $8,000 hoist, and $100,000 in home modifications - had to come out of his own pocket.

But rather than be consumed by frustration, Brian's family turned pain into purpose.

His son Rob was keen to honour his brave father and saw how the right equipment could bring dignity and independence. He also understood how many local families simply couldn't afford it. Rob launched a fundraiser to create something that didn't yet exist in the region - a dedicated, local MND Equipment Library.

With the help of the Barwon Health Foundation and the broader community, that vision came to life and fundraising continues to this day through donations and the annual "Power Up for MND" dinner.

Today, the MND Equipment Library - funded entirely through philanthropy, boosted by the Fight MND movement - supports local patients by providing access to cutting-edge aids, including eye gaze devices, voice amplifiers, wireless head mice, and more. It gives people the chance to trial equipment before committing to expensive purchases, and it gives them something even more powerful - control over how they live.

As speech pathologist Emma Smith explains, "Choosing the right communication device is incredibly personal and critical. Trying technology before purchasing ensures each person's unique needs are met."

Brian defied his prognosis and lived seven more years. In that time, he left a legacy not just in the lives of his loved ones, but in the hundreds of patients who've since accessed the equipment library he helped make possible.

At the MND Clinic at Barwon Health's McKellar Centre, over 200 local patients receive world-class care each year. Their journeys are quiet, often unseen - but they matter.

As we mark MND Awareness Day and honour national heroes like Neale Daniher, we must also remember local ones like Brian. Because while the fight against MND may be national, the local care that truly changes lives begins right here at home.

Zoe Waters
Executive Director
Barwon Health Foundation