'Why we fight' from Neale Daniher, background to his and FMND story

Hi,

First and foremost, thank you for volunteering with FightMND for Big Freeze 11. Whether you’ve been personally touched by motor neurone disease (MND), or you’re simply driven to make a difference in the fight, your support means the world to us.

MND is a Beast, plain and simple. I know this all too well.

My journey with MND started in 2013. The signs were small. A weaker handshake. Fumbling my car keys. Not being able to fix pegs to the clothesline. Seeking answers, I visited my doctor to find out what was happening. Nine months later I had my answer. I had MND.

Back then awareness of MND in the community was limited. Australian-based research into MND was also limited. There was a lack of research infrastructure, which meant Australians living with MND couldn’t access clinical trials. A lack of funding also meant it wasn’t an area of interest for many researchers.

For those living with MND this reality was incredibly frustrating.  

But we didn’t accept that reality. Alongside Pat Cunningham and the late Dr. Ian Davis OAM, we decided to take the fight straight to the Beast. Ian and I were both living with MND, and Pat’s wife, Angie, was diagnosed around the same time I was. We were determined to be disruptors and make a change. With that, FightMND was born.

A decade on, the landscape has changed. Thanks to the unwavering support of the Australian community, FightMND is now one of the world’s largest independent funders of MND research. We’ve invested over $100 million into research and $15 million into programs to improve the lives of those living with MND and their caregivers.

Because of this, more than 600 Australians have accessed clinical trials. We’ve funded 34 drug development grants, advancing potential treatments through the pipeline. We’ve also supported the growth of Australia’s research capabilities, with 22 researchers receiving scholarships and fellowships to continue their vital work.

But beyond the numbers, what we’ve created together is something even more powerful: hope. Hope fuels everything we do. It moves us forward, step by step, and one way or another, we will defeat this Beast.

We’ve come so far, but our work is far from over. Our vision of a world free of MND is within reach, but we still have a long way to go.

It’s people like you who make this possible. You’re part of an incredible community of volunteers whose dedication makes events like Big Freeze so special. Whether this is your first year or your eleventh, your support keeps the fight alive.

Thank you for being a part of this movement. Together, we’re going to keep fighting on until the job is done.

Play on.