My Life

Beast of a battle

FOOTY GREAT NEALE DANIHER REVEALS WHY HE IS PLAYING ON IN HIS FIGHT TO HELP FIND A CURE FOR MOTOR NEURONE DISEASE

When did MND become a reality?

I was diagnosed with MND in mid-2013 but I started to notice something wasn’t right in late 2012. I started to have issues with my right hand. I’d lost a bit of grip strength and I was fumbling with simple tasks — like putting the car key in the ignition. Family and friends had also noticed a soft slur in my speech and I began to trip over words when I spoke. It wasn’t until I sought out the medical staff at the West Coast Eagles (where I was general manager of football operations at the time), that the tests began and after months, ultimately ended with a diagnosis of MND.

What has MND taught you?

Being diagnosed with MND has taught me how important your attitude is when dealing with adversity. No matter what happens, it’s up to you to do something about it. MND is a beast. There is no effective treatment or cure but I never believed that there was nothing I could do.

When I was first diagnosed, I had a choice. The negative thoughts began to nag away at me, ‘this is the dismal reality’, ‘you can’t sugar coat this one’, ‘you’re a goner’. But as I started to think of (my wife) Jan and the kids, I made an overwhelming resolution that a victim attitude was only going to make things worse for my family, my mates and infinitely worse for me.

MND has taught me that we are all hardwired to find a way to not only survive but to thrive. I found resilience — a way to ‘Play On’ and fight back. I also knew I couldn’t fight this alone — life is a team game after all.

What is your advice to those facing similar challenges?

When life throws you something like MND, it’s often not clear what to do. It is confronting and hard. You can feel like there are no options. But you must summon the courage to wrestle back control and not allow yourself to be a victim. Battling The Beast is exhausting, disheartening and a constant challenge. But when life gets difficult, and you think it’s a train wreck, look for the opportunities. There are always opportunities. Mine was to fight back and help make other people’s lives better. Find those moments of humour, joy and peace, enjoy life where you can and embrace the support of your family and friends.

How did football help you to tackle the obstacles you are facing?

Playing, coaching and working in football for many years has taught me resilience. While life can have many highs, it also comes with countless setbacks, adversity and failures. But it’s how you react to life’s challenges and the team you surround yourself with that really matters. From my family and friends to the incredible FightMND Army, knowing I have

CLOCKWISE FROM LEFT: Neale Daniher with granddaughter Rosie; with son Ben’s partner Maddi, daughter Bec, son Ben, son-in-law Michael, Rosie and wife Jan; relaxing at home with Jan.

a team of people who back me through every challenge and obstacle makes fighting back a whole lot easier.

What’s your proudest achievement to date?

Outside of my family, I have been very proud of what FightMND has achieved. In seven years, we’ve rallied an army, committed $48.4m into research, invested nearly $5m in care equipment and been a voice for people who want to fight The Beast. People living with MND now have more opportunities to participate in research or clinical trials throughout Australia. It is proof of the accelerating progress we are making to end MND.

What is FightMND’s goal?

FightMND’s goal from the start has been a world without MND. When I was diagnosed with MND, we knew so little about it. There had been little research, there were no treatments and no cure. On top of that, very few people had even heard of MND. It was our goal to put MND in the spotlight and urge people to take up the fight for viable treatments and an ultimate cure.

I wanted to provide hope for those diagnosed in the future. I wanted to do it by having fun ... doing things like the Big Freeze and Daniher’s Drive.

As my family and I quickly discovered, you are capable of far more than you think and FightMND has shown this.

FightMND has become one of the largest independent funders of MND research not only in Australia but globally. Our investments include 11 clinical trials and 17 drug development projects — projects that will help us achieve our goal of beating The Beast. After a record-breaking Big Freeze 7, we are also set to make another significant investment into research later this year.

What energises you to keep fighting?

Being part of a cause that is bigger than me gives me purpose and a meaning to live and fight. Fighting The Beast is not just about me, it’s about people and helping make other people’s lives better. The Beast has not been beaten so I will keep finding a way to fight, and to have fun while doing it.

What does the community support mean to you?

The community’s enormous support has been inspiring and overwhelming. We would never have been able to achieve what we have without the amazing support of the FightMND Army.

We don’t know when the big breakthrough will come, but when it does, every person who bought a beanie or donated to FightMND through Daniher’s Drive, the Big Freeze, the 27 Challenge or at any other time, will know they played a valuable role in making it happen. Together we have formed a community, determined to fight back and end the suffering of those living with MND.

Did you imagine you would receive an AO medal?

Growing up in country NSW, an Order of Australia Medal was never in my thoughts. It’s an honour to be recognised but choosing to fight back against MND was never about awards. Life is a team game, so I like to think of the award as one for my family. I dedicated the AO to my family — to Jan, Lauren, Mick, Luke, Jess, Bec, Drew, Ben, Maddi, Cooper and Rosie. Their love and support have sustained and powered me. It’s difficult to bear witness to a progressive terminal disease, but their presence by my side is so important.

My entire family, especially the grandkids, Cooper and Rosie, remind me every day to focus on what I have in my life, not what I haven’t.

As a family we’ve learnt that life is fragile and all the possible beautiful things in your life are not guaranteed to be there tomorrow, so look out for them and enjoy them when they arrive.

Where is Daniher’s Drive going this year?

This year’s Daniher’s Drive* will travel through Myrtleford, Lakes Entrance and Warragul, over four days, to support these resilient regional communities as they recover from bushfires and the economic impact of the Covid-19 pandemic.

A cornerstone of Daniher’s Drive is fundraising and since the first staging of the event in 2015, millions of dollars have been raised by the participants through their team fundraising efforts.

The best way to support Daniher’s Drive is to purchase a ticket in The Daniher’s Drive car raffle. You’ll go into the draw to win a brand-new Renault Koleos Intens, valued at $53,000. All funds raised from the raffle go directly towards vital MND research.

*Information correct at time of going to print