How a terminal diagnosis changed Neale Daniher's life and finances

Australian of the Year Neale Daniher is a legendary figure in Australian football.

The former player and coach was diagnosed with motor neurone disease (MND) in 2013 and has since become a powerful advocate for MND research.

In 2014, he co-founded FightMND, a foundation dedicated to finding a cure for the disease. 

What were your formative money experiences?

I was brought up on a farm, one of 11 children. We had loving parents who worked hard. We didn't miss out on too much but learned early that money doesn't grow on trees.

During primary school, we all opened an individual CBA account into which we deposited 20c every week to teach us that saving money is a good financial habit.

We all had jobs and chores as children; everyone old enough was expected to contribute but no income was expected or earned.

I remember when I was at boarding school at 12, I had a bank book that my parents added to. I was allowed to withdraw $1.20 a week.

What that taught me was the need to prioritise how you spent your money. You needed to keep some up your sleeve if you wanted to purchase something substantial in the future.

What did you spend money on? 

In my teenage years, I developed a love for rock music, so I saved for cassette tapes, from Led Zeppelin, Skyhooks and Fleetwood Mac to James Taylor and Neil Young.

What was the pay like for footballers in the 1980s? 

My first year in the VFL was 1979. I was 18 and played for Essendon.

I played every game in the seniors that year and won the best first year player for the competition.

I earned about $10,000 in my first year. Football was part-time back then. Everyone had to work or, in my case, study.

My father negotiated my first contract, as he did for my older brother Terry, who was playing for Essendon too.

How did you manage your earnings? 

For my second contract I used the services of a player manager, who encouraged me to invest in my first home in Essendon for about $80,000.

Outside super, I tended to stick with property investment.

What was your first job and what did you earn?  

After graduating from RMIT in computer science in 1982, I got my first job as a computer programmer for Canon.

I think the salary was $25,000. I went on to study for a graduate diploma in finance; I envisaged my professional future would be in the finance industry.

I continued in the computer industry until my early 30s before becoming a full-time professional AFL coach.

My first full-time position was as an assistant coach with Fremantle in 1995. Any football money as a player was seen as a bonus as my day job was the core to my earnings.

How did your MND diagnosis impact your financial goals? 

I was in my early 50s when I was diagnosed. Prior to that, I was in excellent health. I had life insurance but regrettably no permanent disability insurance at the time.

I retired in 2014, and we have been living off my super savings. My wife Jan works part-time and our four children live independently.

We had no major debts with no outstanding mortgages.

I am currently supported by the NDIS, which I am grateful for every day. The NDIS funds my carers, who look after me wonderfully.

This disease is progressive, and I currently can't swallow or speak and can't use any upper limbs. I require constant care.

How do you balance the need to plan for the future with enjoying the present? 

When you have a terminal illness, there is not a lot of planning for the future.

All focus is on the short term, knowing that how I am feeling today is always going to be better than tomorrow.

So, enjoy each day as it comes. Financially the focus is on Jan being comfortable and that she has enough in superannuation to meet her needs going forward.

What financial advice would you give to others facing a serious illness? 

In hindsight I would suggest everyone over 50 should have income protection.

Life insurance is mandatory. You need your finances in good shape before the rainy day.

How has your experience with MND shaped your perspective on life and money? 

In terms of money, my perspective hasn't changed - it's best to have some stored away for a rainy day. Saving money over a lifetime is a good financial habit.  MND just reinforces the idea that 'life happens while you're making other plans'.

It is a reminder that, no matter how carefully you plan your life, unexpected events or circumstances often arise.

I have a saying in life that I often ask myself, "Well, Neale, where is the opportunity here?"

Success and happiness often come from adapting to life's twists and turns, rather than rigidly clinging to plans.

It has taught me to value being present and appreciating what's happening in the moment, instead of being solely focused on the future.

You co-founded FightMND in 2014. Ten years on, are we closer to finding a cure? 

MND is a formidable opponent. No two cases are the same.

For me, it started in my hands before moving through my upper body. For others, it starts in the feet and legs.

What this does mean is that a possible treatment, or cure, for one person may not work for another.

This is why research is crucial in this fight. The more people that are looking, the better the chance they will find it.

When I think back 10 years, Australia's MND research community was incredibly passionate but, due to a lack of funding, very small. Access to clinical trials for those of us with MND was limited and public awareness was almost non-existent.

Thanks to the generosity of our supporters and the community, FightMND has been able to invest more than $115 million in research into treatments and a cure as well as initiatives to support those living with MND and their families.

This investment has transformed Australia into a central hub for MND research. Researchers know more about MND and the people living with it than ever before.

What achievement are you most proud of so far? 

At FightMND we say, "It takes people". To beat the Beast, we need people to come together to make a difference.

Each year I head to the MCG and see the community come together under a sea of blue beanies.

This brings me immense pride.

Seeing that grow across Australia in recent years is truly special. The generosity of the public knows no bounds. Their support shows everyone affected by this truly horrific disease that they are not alone.

What's the best money advice you've ever received?  

When investing, be patient; compound interest works well over time.

Please finish this sentence. Money is good for...  

... giving you freedom to adapt to life's twists and turns while staying grounded in what truly matters.

Visit fightmnd.org.au to support Neale's mission and help make a difference.  

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