People with Purpose: Community Directors graduate is up for the fight against MND

After more than 20 years on commercial radio, Tilley left KIIS FM to lead the Aussie Dollar Drop from 2018, which saw voters donate $1 to help the homeless. From 2020 he was the chief communications officer at Foodbank, before becoming FightMND's chief in July 2024. He talks about his journey to become a not-for-profit leader, with help of the Institute of Community Directors Australia (ICDA).

Tell us about your current organisation and the work you do there.

FightMND is an organisation whose mission is to find a cure for MND. We have channelled more than $115 million into research for both a cure and the care of individuals fighting the disease we call the Beast.

Our ubiquitous blue beanies have become a part of the winter landscape, and our feature event is the Big Freeze clash held at the MCG every King’s Birthday.

How did you come to be involved in this work?

I was approached to apply for the role whilst I was working for Foodbank. I guess I was no longer considered ‘that guy from radio,’ having established my ‘chops’ during a pretty dramatic four years of covid and the cost-of-living crisis working for a frontline food relief organisation. I also liked the idea of free tickets to the footy!

What impact do you think your organisation has in the community?

I think our impact is twofold. Firstly, we give hope to people dragged in to the world of living with MND. That’s around 2,600 Australians and their families at any given time.

I also think we have an impact on the broader community as our major campaign unfolds. To see 80,000 people all wearing beanies inside the MCG is a very unifying force.

I think we bring a strong sensibility that it takes all of us coming together to bring about change, but with that comes a great feeling of belonging. That sounds very worldly. Maybe people just get cold heads in winter.

What areas of work are you particularly passionate about, and why?

I’m particularly passionate about trying new things. I think the not-for-profit space can tend to think it exists in a different space to the commercial world but I’m not so sure.

In the end we are all competing for people’s attention and emotional connection. So are Apple and Nike. We need to appreciate that not everyone spends their day thinking about how they can be more altruistic – but they won’t walk past that thought if you put it to them in a unique, engaging and even sometimes fun way.

What are some of the most rewarding aspects of your work?

It’s always seeing how appreciative the people who benefit from the work of our team are when we spend time with them. It can be highly emotional. You don’t get that from a stock market trade.

Have you always been driven by a desire to create positive change? What fuels your motivation?

Driven might be overcooking it. I think everyone wants to feel that what they spend their time doing is worthwhile…and possibly making someone else’s day or life a little easier.

In the end, though, workplaces are pretty similar – so ultimately, it’s about creating a workspace where people feel valued, empowered, and able to have a laugh as well.

What prompted you to undertake the Diploma of Governance with the Institute of Community Directors Australia in 2019?

A number of things. The need to have some serious not-for-profit credentials from a CV perspective; a desire to return to education and not approach it like a 20-year-old party head; the fact that I really admired the work of Our Community and the way they approach learning and thinking. I’m lucky enough to have crossed paths with Denis Moriarty (Our Community’s group managing director), whom I consider a great mentor and friend.

What are some of the key insights you’ve taken from the course that you’re now applying in your work?

The ultimate value of good governance and integrity – and how easy it looks on paper, but how hard it is in reality.

What do you see as the biggest challenges or opportunities facing your sector right now?

There are a few. The cost-of-living crisis is affecting people’s donation habits. The “Trump effect” is sending shockwaves across funding streams and government behaviours around the world – for researchers and universities alike. It’s getting harder to reach people amidst a sea of social media and digital spam – and AI might make that worse, not better. Remaining relevant as attention spans move on is another big challenge.

How do you and your team manage your workload with limited time and resources? Any tips to share?

Keep reminding your team how much you value them. Keep it fun. Keep it flexible. Invest in “treats”. Make sure pro bono help isn’t taking more of your time than it’s actually worth.

What’s your view on the role of the Institute of Community Directors Australia in supporting community organisations?

It’s crucial. Most people who gravitate to these wonderful organisations do so because of their big heart – not because they’re rounding out a well-manicured and highly relevant career path. Sure, they bring multiple skills from other parts of their life, but more often than not, it’s a whole new endeavour kept alive by passion more than process. You need both.

More about the Diploma of Governance