Neale Daniher: AFL legend reflects on the FightMND cause ahead of Big Freeze 6
Footballer, father, Victorian of the Year – Neale Daniher wears a lot of hats. But the most important one is the blue FightMND beanie, which has turned into a beacon of hope and united the entire AFL community. Daniher, and charity co-founder Pat Cunningham, chat with Hamish McLachlan.
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Neale Daniher has a CV to be admired.
Brother, husband, father, player, captain, coach, Victorian of the Year.
He wears many hats, but his role leading the fight against the disease he has labelled ‘The Beast’ is the one he wears most regularly these days.
He gets great assistance from many sources, but Pat Cunningham might be the one Neale works most closely with.
Pat looks like Tintin, has a terrible backhand, is one of my closest mates, and lost his wife, Ange, to MND in 2016.
Together with Dr Ian Davis, Neale and Pat founded FightMND.
Ian was a sufferer of MND and passed away in 2018.
Neale and Pat continue to lead the “army” in a bid to find treatments for MND and, ultimately, a cure.
They are spending their days trying to beat the most hideous of diseases, but are determined to entertain as they do it.
HM: Neale, do you prefer to be referred to as an award-winning author, Victorian of the Year, former Essendon Captain, former Melbourne coach, Jan’s husband, Dad or founder and patron of FightMND?
ND: I like them all, but if you go with “award-winning author”, it allows me to shamelessly plug my book When All Is Said and Done. Thanks, Hame – nice start …
HM: On the book: is it true that when you told Pat you were writing one, Pat just turned up one day and submitted a foreword for you — even though you didn’t ask him to write one?
ND: That’s almost true … our good mate here was bloody annoying, texting, calling and emailing before I’d even written a word! It was a good foreword but I had to draw the line when he asked to be on the cover!
PC: So how many copies have ‘we’ sold now, Neale?
HM: So many achievements — you’ve invested over $38 million to fight MND and I know you’ll be announcing another major investment in the fight very soon. You are clearly a high performer — how did you end up with this clown as a co-founder and running mate?
PC: Hamish, seriously … don’t call Neale a clown, he’s sitting right there …
HM: This could take a while, Neale …. what’s been Pat’s biggest balls-up to date since you started working with him?
ND: How many pages have we got?
PC: It’s all about growth, Hame.
HM: Early days, late 2014: what was it like starting FightMND?
ND: Pat, Ian and I were very keen to raise the profile of the disease but we were novices … to use an analogy, we were like a little garage band searching for an audience. We started writing music, and we thought there was something there, but it needed refinement. Thankfully others were keen to join the band. We have been so fortunate in that regard.
PC: The public see Neale as our frontman – our Mick Jagger. But Neale doesn’t just sing, he plays every instrument and calls us out when we are off-key.
ND: It’s the FightMND army that makes the noise these days, Hame, and I’m glad they like to play it loud!
HM: What was the aim at the beginning of the FightMND quest?
ND: The aim at the beginning was to raise awareness and champion hope for those impacted by MND. And we wanted to take the fight to MND by raising funds to support researchers in their attempts to find effective treatments and, ultimately, find a cure.
PC: Although the Big Freeze is all about fighting The Beast on the scientific front, our other activity includes raising funds to support those living with the disease today. For many years, MND associations throughout the country have been providing care directly to those living with the disease. They do it well, so avoiding doubling up on efforts was a priority. We work with these associations to identify priority areas and we fund the acquisition of equipment to enhance their capacity to deliver better outcomes for those fighting The Beast. We try and make sure it is a collaborative and efficient approach without duplication.
HM: Pat, what’s the secret sauce in the Fight MND recipe? Why does it resonate with so many and why has it had so much buy-in?
PC: I think there’s a few things … you don’t need to know too much about MND to understand it’s an insidious beast of a disease. You’ll remember Ange (Pat’s wife) had a more colourful name for it! And it doesn’t let people live for very long as a rule from diagnosis, but for whatever reason, Neale Jagger here next to us is an outlier in terms of survival. And he has chosen to share his experience with the disease and represent all those who have fought, are fighting and will fight the Beast in the future. So we have a well known face lead the charge, who is adamant that we really do enjoy making people smile and getting them involved as we fight together. Neale has always said to us that he wants the army to enjoy the ride, to learn about (the disease’s) horrific effects, and while they are learning and helping fight, be entertained, and wear their beanie as a badge of honour. Hame, you’ve got the best seat in the house on Big Freeze day each year with those post-slide interviews. How good is it to hear the laughter of the crowd who have come in early in the blue beanies?
HM: Amazing … as is looking out from the commentary box and seeing the blue beanie being worn by the majority of the MCG. Pies fans, Dees fans, all barracking and supporting and hoping for one outcome.
ND: It is a great sight when you walk on the ground before the bounce and see all the army together in their beanies — bloody great.
HM: I’ll ask you about the beanies later because you almost didn’t let it happen! Six years in to raising funds and investing into research — what progress have we made?
PC: Mate, the work we have done has allowed us to have some of the best MND minds internationally guiding the investments we make on behalf of our army. It’s our greatest responsibility. We are lucky that MND research, internationally, is at its most progressive right now — and the tenacity of the FightMND army has helped this be the case. From the Federal Government to the primary school child saving up their pocket money to get the latest beanie, they all play a vital role in this momentum and allow the best minds in the world to continue to work on the outcomes we are all praying for.
ND: Hame, having hundreds of Australians with MND participating in drug trials was unheard of when we started. We have invested into state-of-the-art technology that allows much faster assessment of potential treatments. Developing a drug into a clinical trial is a key objective, and we have two projects already that have been able to make this painstaking step. We need to keep making progress. Each beanie, each donation is a step forward and each step allows the best people in the world focus on bringing the Beast down.
HM: Thank God for the brilliant minds. It all started out as the three amigos with an idea or two — how many on the FightMND Board now?
PC: We have progressed from three people who sat in a borrowed meeting room at the Whitten Oval, to 10 committed and generous professionals across a variety of disciplines all volunteering their time and expertise to the fight. Our chairman, Billy Guest, has been in the trenches since the earliest days of the Big Freeze. Board meeting preamble from the chairman can often be a colourful commentary about the progress of the Dees, but when the flag drops the tone changes and the focus narrows to the responsibility we have to invest the army contributions with the view to landing a body blow on The Beast.
HM: Neale, you talk about The Beast being a formidable opponent. Life expectancy is about 27 months from diagnosis — you are over six years in. How has COVID-19 affected you?
ND: Hame, those of us living with MND have had to be particularly vigilant with isolation. Both MND and COVID-19 attack the respiratory system, and having both the disease and the virus together wouldn’t be much fun! I’ve played it safe. In terms of FightMND, we’ve taken a big hit. We made the tough call last week to park the Daniher’s Drive for 2020. The plan was to tour through the areas affected by the fires earlier this year to give them an economic boost. Unfortunately, it just can’t happen with the COVID-19 constraints. I’m disappointed for the big team of volunteers that work so hard to pull it together but they understand it’s the only decision we could make. Daniher’s Drive 2021 will be worth the wait!
HM: I’m sure. You hoped there would be buy-in from the public to help, but there are hundreds working in a voluntary capacity to make so many things happen — there are members of the army everywhere …
PC: And they’re easy to spot at this time of year, Hame.
ND: It’s beyond anything we could have imagined. The contributions the FightMND army make are wide and varied and constant. Whether it’s those selling or packing the beanies this morning so people can have them for the broadcast on Channel 7 tomorrow, or the Federal Government contributing to important major research projects, all the contributions together allow us to keep building momentum. They are all so important, and all part of the machine, and they all matter.
HM: Is there a story from one of your army you’d like to share?
ND: There are too many, Hame!
PC: Honestly, Hame, we could fill the paper with story after story of young and old individuals, and families, and towns, businesses and schools and community groups who’ve been inspired by either Neale or someone in their community battling The Beast. I won’t highlight one, but there is a pattern that emerges, which is that from hearing Neale speak, those diagnosed with MND almost always decide to focus on what they can control, rather than what they can’t. They decide to make the best of the very ordinary situation, and typically, with overwhelming support from their friends and family. Each story has heartbreak but, in a way, is heartwarming too …
HM: Great outcomes. They say success has many fathers, and failure is an orphan. Whose ideas were the Big Freeze and the beanie?
ND: I think it’s fair to say the game — Collingwood v Melbourne on Queens Birthday Monday suddenly has a few fathers — but I’ve got to give Pat the credit on the slide concept — the Big Freeze. That was his, surprisingly …
HM: The Big Freeze has left a legacy. My kids only want to go to one game a year … “the Big Freeze ice sliding game, Dad!”. Well done, Tintin.
PC: I wasn’t sure it would work — I almost didn’t bring it up in the meeting years ago, but the way it has been embraced by the community and the sliders and the networks, has made sure it works.
HM: Winter is here — either of you two know where I can get a beanie?
ND: I think I could find one or two for you … $20 a hit though, Hame. You can have whatever colour you want, as long as it’s blue!
HM: Whose idea was the beanie? And what was the response?
ND: It was my daughter Bec’s … I said it was a terrible idea and would never work … I said we should make bandannas! We have sold out every year, and will again this year. Well done, Bec!
PC: We speak to people living with MND and they say the beanie is a beacon of hope. Whether it’s on a child on the way to school, a tradie in a ute, or a family on their daily COVID-19 walk, it gives them a sense of hope and hopefully brings a smile to their faces.
HM: How many were sold in the first year and how are things tracking for this year?
ND: The first year was about 10,000. This year, Coles sold over 10,000 on the first day they went on sale. Coles and Bunnings have helped us take the campaign to a new level this year. We are so grateful to have their support. Bandannas … seriously, Neale?
HM: I’m with Bec and Pat on this one Neale … bandannas wouldn’t have hit the mark like the beanie. The Big Freeze 6 is on TV tomorrow — what’s the plan?
ND: I can’t say too much, Hame, but I’m sure it will make you laugh. In a very tricky time, all 18 AFL clubs have backed the campaign again. It has been very challenging given the restrictions in place at the moment but they’ve all embraced it again and I’m forever grateful. And a big thanks to Lewis Martin and the team at Channel 7 again.
HM: Did you ever think you’d see a coach, dressed as a reverend, tear a hamstring so badly he needed surgery from doing the slide?
ND: No, I didn’t … and Fages (Chris Fagan), I promise you, I didn’t laugh at all! I have to thank every last Big Freeze slider, because as silly or as brilliant as they all look, they’ve won admirers from doing it and helped us shine a light on The Beast.
HM: The other night I couldn’t sleep and flicked on the TV and Bohemian Rhapsody was in its last half-hour. When Freddie Mercury walked out on stage at Live Aid, my wife, Soph said, “Have a look at Nick Riewoldt go!”
PC: We have had so many great Big Freeze moments. Tim Watson was the first slider all those years ago, and hopefully if we get it right in time, there will be a last, but Nick was so good last year.
HM: I spoke to Nick on the way up just by chance, and I said, “I’m actually going to see Nealo”. He said, “Send Neale my love”. I said, “It was a ballsy move from you last year, and he said, “I didn’t actually realise how nervous I’d be going up the steps to the stage, and as I was taking each step I was thinking to myself — I can’t sing or dance!”
ND: He nailed it! He got it spot on — like they all do, every year, and will tomorrow. They are all such important members of our FightMND Army!
The Big Freeze 6 is on Channel 7 tomorrow from 4pm.
Beanies are available at Coles and Bunnings and online at www.fightmnd.org.au
Originally published as Neale Daniher: AFL legend reflects on the FightMND cause ahead of Big Freeze 6