In this episode
Jan Daniher, MAK and Bec Daniher.
Following Neale Daniher’s inspirational appearance at Wanneroo Secondary College, his daughter, Bec, and his wife, Jan, chatted with MAK about life since the diagnosis of motor neurone disease, MND. They discuss FightMND, Neale’s organisation dedicated to spreading awareness of the terrible disease, as well as fundraising for critical clinical trials. They also share the joy that AI technology has providing in giving Neale his voice back, and the importance of living in the moment with the people you love.
About Neale, Bec and Jan Danier
Neale Daniher is a football legend and the 2025 Australian of the Year, whose life changed in 2013 when he was diagnosed with motor neurone disease. He was told that 27 months was the average life expectancy of people with the terrible disease, known as ‘the beast’. However, more than a decade later, Neale is still fighting, while also dedicating the remainder of his life to spreading awareness and raising money for crucial clinical trials. Neale’s organisation, FightMND, runs the Big Freeze every June at the MCG during the AFL clash between Collingwood and Melbourne. Well-known Australians dress up as other celebrities and slide into a freezing pool of water and ice to raise money for the organisation.
With the help of his wife Jan, and his daughter Bec (who is the Campaign Director at FightMND), Neale has taken to the stage at every opportunity to give inspirational speeches about the importance of courage, resilience and living in the moment. Now with the help of AI, the technology that he uses to speak sounds just like his real voice, maybe a bit more ocker than it did before his diagnoses, according to Jan. Using decades of videos from his football days, it’s been able to synthesise his voice.
Neale is one of 4 brothers that played VFL/AFL for Essendon. He played 82 games between 1979 and 1990, captaining the Bombers in 1982. He also coached Melbourne between 1998 and 2007.
Neale has history in WA also, having been an inaugural Fremantle Dockers assistant coach (1995-97) and later the West Coast Eagles general manager of football operations (2008-2013).
Transcript
MAK
A warm welcome. I'm Marie-Anne Keefe, but please call me MAK.
Well, we've been doing podcasts for a while now, but I have to say, this is the first time that I've recorded a podcast in a principal's office at one of our schools.
So we're having a quiet chuckle here at the moment about the fact that, yes, we are sitting in the principal's office at Wanneroo Secondary College, and we have just been a part of a student forum with the absolutely extraordinary Australian of the Year Neale Danaher, who was absolutely inspirational and took the time and care to answer the questions that were put to him from our students.
And with me right now, I am joined by the women behind the man who probably don't get seen or heard that often, although one of them is now taking the stage with her father.
I'd love to introduce Neale’s daughter, Bec Daniher, and his wife, Jan. And I'd like to thank you so much for being here with us today and talk a bit about what we've just witnessed in the Performing Arts Centre here at Wanneroo Secondary College.
Your dad sitting on a stage with you, Bec, Jan, your husband, obviously, talking in his own voice to a group of students.
Now, as we know, your dad has for 10 years been battling motor neurone disease. During that time, he and you, Jan and Bec have been working so hard through FightMND to raise money for research and investment into research, medical research. And in that time, you've raised $115 million.
During that time, your dad's health has obviously been deteriorating and Bec you said to me it was about 5 years ago that he actually lost the ability to speak. However, amazing technology that I want to talk with you about now, gaze interaction technology, has meant not only is he able to talk again through a computer generated system, but very recently, and tell me about it, you have heard his voice again after so many years of not hearing it.
Audio of Neale Daniher
We want to protect the people we love and today I want to give you an alternative.
The one thing I really wish for Cooper and for you is learn how to be resilient.
MAK
Welcome and tell me all about it.
Bec Daniher
Yeah, MND is, we call it a beast because it takes away a person's ability to walk, to talk, to eat, and then eventually breathe.
So dad's an outlier. He got told 27 months was the average lifespan and he's with us well into, you know, over a decade and we've been very lucky. But one of the sort of ways that the beast was fighting back against dad was to take his voice and it was a slow progressing.
We spent a period of time where we were almost translating him because we spent the most amount of time. We could understand him, but a lot of people couldn't. And now he solely communicates through the eye gaze machine and it tracks the eye movement into essentially a keyboard and then it comes out.
And for the last 5 years, it's been a robotic voice. You can do voice banking and he made a decision. It was too hard, so he didn't do that.
And only recently through AI technology called Eleven Labs, they were able to take recordings from, you know, 10, 15 years ago and put it into his eye gaze machine. So now he's talking as he used to.
We do give him a little bit of heckling and say it's from his more farming days, a little ocker than he was just before he was diagnosed. It's a little bit different. But for us, it was really important to hear it.
And you remember when he put it onto the WhatsApp chat, we have a family WhatsApp chat, and we pressed play. It was really an emotional one. What was it like for you, Jenny?
Jan Daniher
Incredibly emotional. I still have trouble watching even that video that was shown today when he was speaking to the Melbourne footballers to hear his true voice.
So when he played that speech, that oh, it was pretty incredible. And I know for Luke, Luke used to also listen to a lot of those past interviews just so he could hear his voice.
So for all of us and also for the grandkids.
MAK
Yes.
Cooper was in the audience today, 6 years of age, so he would never have heard Neale’s, his grandpop's voice.
What has that been like for the grandchildren coming to terms with the fact that, Grandpop doesn't sound like this robotic creature anymore. He actually sounds like grandpop.
Jan Daniher
Yeah no look, I think it's incredible and so much better for the grandkids because they were, I think a couple of them were a little bit frightened by the robotic voice and now they will actually, you know, years to come remember, you know, his voice.
So because the grandkids weren't born, you know, when Neale was probably speaking actually. So for them, I think it's really important and for Coop's there today, he was giggling away, you know? He was having a great time.
So I think, and I know for Bec, for your kids.
Bec Daniher
Yeah, it means so much that they can hear Poppy talk to them and it's probably more meaningful for me. But I just, to me that was really special for them to be able to listen to Pop. He's got a lot of wisdom to impart and it was important for me that it came from Pop, not from a computer.
And that's what it feels like. It feels like Dad's talking to us. It doesn't feel like there's that sort of middle intervention from us hearing his voice.
MAK
Your voice is like your DNA, right? And so for us that know Neale from a distance and have heard him over the years speak, it sounds exactly like him.
What is it like for you? How close is it really for those that know him the best?
Jan Daniher
It's close. But every so often I go, ‘oh, that's not quite right’.
MAK
Right, right.
Jan Daniher
It's close but also there's a bit more emotion and feeling in the voice, you know, as it was.
Whereas with that robotic voice, it's just you know, it's one level and it lacks any emotion. So I think it's fabulous because it's pretty close. They've done an incredible job.
MAK
Well, we all talk about how terrible AI is and scary and, you know, the deep fakes and whatever. In this instance, it is the very, very best of AI.
Bec Daniher
I think so. AI can have such opportunity for it. And then we're hearing a lot about the consequences of it, the negative consequences but this is a moment where we can celebrate that this technology is only available because AI is in the picture and it's being able to take this.
It wasn't something that was feasible before AI became something that we've been around for a while. We're looking at how we can optimise it.
So I'm very grateful that we're able to put this in play and have dad as dad again.
MAK
Well, talking about that for people that don't know, the presentation that you've done over the last couple of days, and I've seen it twice, is effectively yourself and Neale in his wheelchair on stage with a PowerPoint presentation behind and Neale’s voice narrating, or in this case today, answering questions.
As a person who is in the audience watching this, I have to admit that on Tuesday at the lunch I went to, I sobbed for half an hour and it wasn't sad sobbing. But it was the power of what was happening on stage because your dad is sitting there reacting and engaging and communicating with everybody in that room through his eyes, his facial expressions. They might be limited, but I'm telling you right now, that smile is still there.
So this is extraordinarily emotional and it's like nothing I've ever seen. What is it like for both of you being part of this?
Jan Daniher
I think we know that behind the scenes, what happens behind the scenes, and for Neale to get onto a stage, to get to an event, takes so long and so much hard work, and he has to prepare himself.
And, you know, I think there are days where I think he thinks, ‘I don't think I can do it’, and yet, you know what? He gets there. And even on Tuesday on stage, I could see there were times when he needed help, he needed suction and things like that.
But you could see he was just so determined, so determined that it went well that he just pushed through it. It was pretty amazing.
Bec Daniher
He always talks about being the lead singer, you know. He wants to be out there on stage and giving it all that he can.
So like you said, even if it's just a little shake of the head or, you know, looking up, he can bring his story to light, that's for sure.
And Dad's always been – and he got called the Reverend.
So he is a storyteller that can bring these words that have meaning and purpose and make you think, and he's always been able to do that. MND, for a period of time, took away his voice and his ability to get his story out into the public and now he's found that voice again.
Jan Daniher
And I think there'd be no stopping him now Bec
Bec Daniher
I know, I know.
And to support him, it's really easy.
MAK
He might be pushing you off the stage soon.
Bec Daniher
I wouldn't be welcome on the stage anymore no doubt.
MAK
What is that like for you? He's a hard act to follow.
But I've got to say, the interaction between you and your dad, there's this beautiful, it plays out on stage, just this beautiful energy.
It's like a fireside chat, although like Jan, talking about all the preparation that goes into it, it's anything but.
But it feels like we're in your lounge room and privy to this beautiful private exchange about your life, about the MND, the fight for MND. What is that like for you being center stage next to your dad?
Bec Daniher
Well, I think I'm so grateful to be there. I feel like it's a privilege to listen to dad's words. It makes a lot of impact to a lot of people. It's inspired a lot of people.
For me, it's listening to someone I respect, I admire, I want to emulate, and I get to sit next to him and there's glimpses that we give to the public, but we get to you know, be in our living room and have these conversations. And he's the first person to challenge, to test, to make you think beyond what might be, what you can see in front of you and I do feel like half the time he's 10 steps ahead and he's guiding you there and I'm like, just tell me the answer.
MAK
Don't make me suffer.
Bec Daniher
I don't need to learn. I don't need to be challenged today, I'm tired.
But I really feel like I've learned so much from him. I respect his story, his perspective, and to be on the stage and continue to learn from him, it's a privilege.
MAK
It's a total privilege for all of us.
There's so much work that you've done, but yet there is so much to do. $115 million down.
Now, Jan, you were telling me that even on this trip here, in between all these speaking engagements, you have been connecting with your networks.
I have also seen Granny Janney's socks. So could you tell me all about the work that you're doing and how people can be involved?
Jan Daniher
Look, there's a lot of ways people can be involved. If they wanted to donate, we've got our Big Freeze coming up in June.
So we've got Big Freeze beanies, which you know, fly out the door. We always sell out of those. And we've also got Big Freeze socks, which has been one of my babies.
And so I've been going around while I've been here just chatting to, you know, Netball WA have always been big supporters of Fight MND. And there's so many clubs, sporting clubs in WA that have supported us and done some incredible work.
Lake Grace is an example. They run this massive Big Freeze in the middle of, you know, just middle of nowhere, there's not much there, but the people, the community come together and they put on a fantastic event and raise a heap of money. They order socks, they order beanies, they have a slide, but they're just one.
There's so many people and I think that's the thing that we love is that it brings communities together and when we go out to these different sporting clubs and see the amount of work that goes into it. I mean, the people that organise it are so busy. You know, they're incredibly busy, but they take on this extra work and get their communities together.
They have a lot of fun, and that's been something that we've always wanted fundraising to be is fun.
Bec Daniher
And just even when we were talking to the students today, there were 4 people that had spoken about their MND experience, their direct connection to MND.
So there was, I'm not sure, about 200 students in that room.
MAK
240 students.
Bec Daniher
And I only spoke to 10 people, so that's not reflective. But 4 of them came up to talk about their personal connection to MND. And that's what we see again and again. And when someone's been impacted by MND, it's the entire community that gets affected by it.
It is a beast, it's brutal, and it makes an impact and so that's why communities rally behind it.
Just yesterday we met with this beautiful family. A husband is in his mid-30s. He's got 3 kids under 6. He's been diagnosed just in March, and they're working out how they can sort of take on the perspective like, Dad, how can they fight back? How can they bring their community together? Because what they were saying is their community was almost desperate to support them and help them. They just didn't know how.
MAK
What do we do?
Bec Daniher
‘What do we do? What do we do?’ She was talking about how she's got a freezer full of lasagnas. She's got plenty of lasagnas because people want to help.
So a way that they can is through these amazing fundraising events that bring a community together, makes an impact. The funds raised is unbelievable by these communities and it is being translated into critical research as well as care for people currently living with MND.
So it's so impactful. It allows people to sort of have control and, you know, fight back and have a lot of fun.
Like dad always says, can't spell fundraising without fun and only a dad can get away with that.
Jan Daniher
And I think the other thing is, if you're a family and you've got someone who's been affected by MND, you don't feel so lonely?
I think it can be a really lonely disease, especially when you lose your ability to speak.
So I think when these families feel that there's people behind them or they see people with the beanies going, like, I just love, you feel like they are thinking about you. They do want to help and they're right behind you along the way.
MAK
Well, that sense of community for people facing a diagnosis like this family will be a lifeline for them.
And you've been there. You know how lonely that road is.
Look, I know you've raised $115 million and I don't even know if you know the answer to this question, but how much money do you need to get this work done? How much?
Jan Daniher
Look, I think research is incredibly expensive and we're only 10 years on.
You look at other diseases, cancer, people have been spending you know, millions and millions of dollars, billions of dollars on cancer research.
So there's so much work to do. But when Neale was diagnosed in 2013, there were no clinical trials.
MAK
Not one.
Jan Daniher
There was nothing for him to even look at. You know, it was just go home, get your life in order and tick off a bucket list.
And so now people that are diagnosed, so we're stepping, starting to step forward, they're clinical trials. You know, we've got 15 clinical trials. So that's the start, but there's a way to go.
So it's going to take a lot of time and a lot of money.
MAK
And for you, you're the executive director of FightMND and Jan, you would be the absolute lifeblood of it as well on a daily basis, certainly in terms of your care for Neale, but also you are involved in the running of the charity as well.
I guess this has now become your whole life. This is your mission. You could never have imagined in a million years that this would be where you would end up.
Jan Daniher
Could never have imagined it.
You know, 11 years ago, we were living in Perth. We both had jobs in sport. We had 4 kids and they were growing up and Ben had just finished school. Life was great. It was fantastic. We loved Perth.
And then in a flash of an eye, everything changed and, you know, we moved back to Perth. We both had to change it, well, had to give up our work and to think we'd never have thought that would possibly happen.
And then just working through, you know, what we were going to, how we were going to do, we were thinking Neale was going to die in 27 months.
So we planned for that, moved back closer to family and then it's been fantastic to have a purpose and feel like we can do something. And Neale, he just wants to do as much as he can while he's alive.
He knows that he'll die before probably there are any major breakthroughs, but it's so important to him and so it's incredibly important to us.
MAK
And his message of live urgently and don't wait and have those conversations. And actually, your legacy is not something that happens after you die. It is something that is happening right now. I mean, for him, never a truer word could be said.
Bec Daniher
Absolutely. For us, and we know it firsthand that tomorrow is not guaranteed. Your life can change. Your priorities can shift. But all you can do is take a hold of what's in front of you. What's the next step that you're going to take? How can you focus on that? And one thing that dad's always said is that we need to focus on the one thing we can control. Everything can be taken away from us. But the one thing that we can control is our attitude.
So when we are faced with hardships and everyone will go through adversity, it's not if, but when and how often, all we can control is how we turn up.
What are our choices that we make? How do we hold ourselves despite the challenges?
So we are taking every moment as we can and as a family, I think the moments that we have together, it's more precious.
I never thought dad would walk me down the aisle and I'm not an emotional person that often, but there were tears. I was holding back. I was like, ‘this is a good day. I'm not crying’. He walked me down the aisle and then he's met my 2 beautiful girls. I never thought that would happen.
So these moments just become a little bit more special and I think sometimes there has to be something that reminds you about how precious life is, how things aren't always going to be as they are. So if you're not taking your time to reflect and acknowledge all the great things that you have, and if you get stuck in what don't I have or what are the challenges that you're facing?
That's a hard way to be. You need to be looking at the time is now. My people are here. I'm doing what I can. I'm having a positive outlook.
How can we enjoy the moments we have and write your legacy right now because it's happening. Life is happening.
Jan Daniher
And I think, you know, the things we used to worry about.
MAK
Yes. Gosh, you wish you had those worries again.
Jan Daniher
Right? Yeah, absolutely.
MAK
Bring that on.
Bec Daniher
Oh, I walk in sometimes and I go to see mum and dad. I'm like, ‘oh, I'm just so stressed. Oh, I hurt my back. Oh, crap. I am fine. I am great today’.
It's a reminder every time about you don't complain about the small things. Don't sweat the small things. There's much harder things that will come and so you've got to build up your resilience and take the opportunities and try and just grab life because, again, tomorrow is not guaranteed.
MAK
And the simplest things, and I walked away from that lunch on Tuesday with exactly that perspective. My life looked very, very good when I walked away on Tuesday because the things that I was making a big deal about in my mind suddenly melted away because just even the effort to physically be there on that stage before anything else.
I mean, on a day-to-day basis, Jan, what is that like for you?
Jan Daniher
Yeah, look, just to watch what Neale goes through to get out of bed and how long it takes to have a shower, get dressed.
He's peg-fed now, so he has food that goes straight into his stomach. You know, we look, ‘oh, that meal wasn't very nice, or we might’... How can we say that? You know, because he can't taste anything now. Like, he doesn't get to taste...
MAK
Or chew or a savour.
Jan Daniher
Well, he used to. He tried to keep eating for so long, but he would be choking all the time and in the end I said to him, ‘hey, you just can't do this’ because I was scared he'd die eating food.
And he loved a red wine.
MAK
You can't put that down the tube? It doesn't work?
Jan Daniher
Well, because he can't taste it. I think he just goes, what's the point?
MAK
So those pleasures, those small pleasures, which we take for granted.
Jan Daniher
And I think if we go out for dinner, which we rarely do now, but when he's sitting there and everyone's having a steak or fish or whatever. And I always think, ‘oh, that must be, it must be awful just to be sitting there having your food go through your stomach’.
Bec Daniher
Yeah, and I think it, and then that's a good example, just sitting around and having a conversation.
I guess technology is fascinating and it's amazing and it's reconnected him, but a conversation moves at speed.
So if we were to talk and then someone had to, even typing is quicker than what he does, but it takes you out of that. And there's two sides of that. That must be so incredibly frustrating for him.
MAK
Because he's so quick-witted.
Bec Daniher
He's so quick-witted.
MAK
You know, we've seen him time and time again on the talk show panels and he is so sharp and quick-witted.
Bec Daniher
And so the conversation moves at pace that he's always behind. And so that's just a hard thing.
For me, in our society where it moves at such pace, when you're having a conversation with dad, you need to just wait. And originally when I started having conversations, I'd say, you know, I'd ask him a question and he starts typing and I felt like I'd have to pick up my phone or I had to do something while I waited.
And it came a moment in time I was like, ‘I'm just going to sit. I'm just going to sit and we can be in silence’. And that's a thing that we don't have much in society anymore.
So that's been something quite eye-opening. And it's interesting watching other people chat with dad that you can see people get uncomfortable because they're just not, there's not consistently stimulus.
MAK
Or feedback.
Bec Daniher
Yeah.
So it's just a moment in time where I've just learned sometimes just sitting and being and being silent is a good thing and how my natural go-to is to fill that with something.
So, you know, it must be incredibly frustrating for him and it's been eye-opening and a learning journey to not just to sit and be.
MAK
It's actually part of the magic of your presentation, the pace of it, the fact that there is silence. And when there is that silence, you can hear a pin drop in that auditorium or in that room.
I want to finish with a great big plug for the Big Freeze. I had to laugh when all of our students were trying to find clever ways of getting themselves a ticket to the MCG to go down the slide. They were sounding you out as to how they'd get invited, but you did make it clear it is invite only.
And what can we expect this year? What big faces, names do you have going down into the minus three-degree pool of ice? Can you reveal or is it top secret? Give us a hint.
Bec Daniher
It is top secret. I can't. I can't.
MAK
Just a little teaser.
Jan Daniher
I'll give one.
MAK
Come on, Jan.
Bec Daniher
You better not give one.
MAK
Jan, no.
Bec Daniher
You better not give one.
Jan Daniher
Let me just say that the launch of the Big Freeze will be very public.
MAK
Okay.
Jan Daniher
And very special and in a place where there will be hundreds and hundreds of the public.
Bec Daniher
Lots and lots of people.
MAK
Okay.
Bec Daniher
And that's it from our sliders. I think there are... You know, potentially we might, you know, it's been such an honour that Neale is Australian of the Year. I'm not saying it's Australian of the Year focused at all, so I'll take that out so people don't go down that pathway, but I think it's a great opportunity to honour some great Australians.
MAK
Okay. So it has an Australiana, Australian Idol theme. Can I put it like that?
Bec Daniher
No one will be auditioning on the vocals, that's for sure.
Jan Daniher
Perhaps you could be.
Bec Daniher
Oh, no, no, no, no.
MAK
You do say your dad likes to think himself as a singer, so maybe. Yeah, who knows?
Bec Daniher
I would say that music talent, he's talented at many, many things, but music talent is not.
He's a great listener and consumer of music.
MAK
I'm going to plant a seed about the Big Freeze rap.
Bec and Jan Daniher
Ooh. Mm. Okay. Yeah.
MAK
So that might be where the singing comes into it anyway.
One last thing.
If you could just leave people with one message. One call to action, let's say, what would that be?
Jan Daniher
What I would say is that if there are people around you and they're struggling, spend some time and ask them if they're okay because I think we're so busy, we're moving so quickly and I think we might say perhaps we will later on but I think it's really important that people look around, see someone if they're struggling and just go and support them wherever they can.
Bec Daniher
And for me, I would say what we've learned over this journey is the impact of a collective.
So for me, it's small steps will make great changes and I love this quote, which is small deeds can cause great acts. I'm not getting it exactly right, but I think a lot of people see a really big problem and they're too scared to take that first step because it just seems too big.
What we've learned is you just have to take one step to make a change. And it can be medical research is expensive and it takes time, but medical research is being delivered because someone went into their pocket and bought a $25 beanie, or they put $5 across through our donations, or they went to support a friend through a fundraiser.
Small steps are going to get us to Everest. So just be willing to take that first step.
MAK
I always ask the people that I interview, if they had one wish, what would it be but I'm not going to ask you that question because I know the answer.
Bec Daniher
Yes.
MAK
It's a cure. And I wish you every luck on that journey. Thank you so much for your time today. It's been a real joy and a privilege.
Jan Daniher
Thanks for having us.
Bec Daniher
Thank you.
MAK
You've been listening to Ed Talks WA.
This podcast has been recorded on Whadjuk Noongar land. We pay respect to the traditional owners and to their elders, past, present and future.
Notes
Read more about FightMND on their website.
The Big Freeze returns in June. Learn more here.