Matt Tilley is the CEO of FightMND, the Australian organisation co founded by Neale Daniher to raise funds, awareness, and urgency in the fight against motor neurone disease, also known as ALS. FightMND has become one of Australia’s most recognisable charity movements through the Big Freeze, the blue beanie campaign, and its national effort to fund research into a cure.

In this episode of Tim Green’s Nothing Left Unsaid, Matt Tilley joins Tim and Troy Green for a conversation about ALS, motor neurone disease, Neale Daniher’s legacy, the reality facing patients and families, and the difficult balance between cure research and care for people living with the disease today.

The conversation covers FightMND’s work funding ALS and MND research, the role of the Big Freeze in turning public attention into real scientific progress, and the frustration of watching research move slowly while families are waiting now. Tilley explains why hope matters so deeply to people living with ALS, but also why hope must be handled honestly when the disease becomes too much for some patients to bear.

Tilley also discusses the personal stories that stay with him, including families forced into intimate acts of care, patients who choose not to continue with breathing support or feeding tubes, and the quiet goodbyes that often go unseen. These moments reveal the human side of ALS that statistics, slogans, and fundraising totals cannot fully carry.

The episode also explores the growing role of technology in ALS care, including voice technology, eye gaze tools, brain computer interfaces, and assistive devices that can help people communicate, eat, and stay connected when the disease takes away movement and speech. For Tim, who lives with ALS and uses voice technology to keep having conversations, this part of the discussion is especially personal.

Recorded before Neale Daniher’s passing, the episode now carries added weight. Daniher’s fight helped turn motor neurone disease into a national cause in Australia, and his legacy continues through FightMND’s work, the families it supports, and the researchers searching for a cure.

This is a conversation about ALS, motor neurone disease, grief, hope, humour, medical research, patient care, and what it takes to keep fighting when the cure still feels too far away.