Voiceover
Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.
Jeremy Henderson
Hello and welcome to The Raw Nerve. I’m your host, Jeremy Henderson. Today we spotlight and explore MS Readathon, an annual reading challenge for kids held in August to help raise money for families impacted by multiple sclerosis. Joining us in the studio today, we have David Curd, Chief Executive Officer for MS Queensland, one of MS Australia’s four MS Member Organisations. Welcome David.
David Curd
Hey Jeremy, good to see you.
Jeremy Henderson
Our second guest today is Rachel Kerr from Rockhampton. Rachel is a treasured MS Queensland and MS Readathon Ambassador and the recipient of MS Australia’s 2023 John Studdy Award. Welcome Rachel.
Rachel Kerr
Thank you for having me, Jeremy.
Jeremy Henderson
MS Readathon is a national event run by MS Queensland on behalf of our other Member Organisations, MS Plus, MSWA, and MS South Australia and Northern Territory.
David and Rachel, before we start, I wanted to share with you that when we ask people on the podcast when they first heard about MS, the answer is typically that they participated in the MS Readathon at school. This seems to be true of politicians, people newly diagnosed with MS, researchers, stakeholders and the general public more broadly.
The reach of MS Readathon really is extraordinary and for many, it’s many people’s first introduction to MS. So today we’re going to chat about MS Readathon’s legacy, how it works and how its broad reach and awareness by default helps MS Australia’s advocacy efforts. So, David, I wonder if we could start with you and let’s talk about the history of the MS Readathon. When did it start?
David Curd
Yeah, look, Jeremy, I’m so glad that we’re actually even having this conversation about MS Readathon because it’s…it actually is an iconic event in itself. Its history goes way back to 1978. Hence, you know, it’s really multi-generational. It’s not just parents today, but grandparents can remember either doing it or encouraging their children to do it, which I’m sure Rachel will talk about more.
But I think you’re spot on. I think, you know, the familiarity with the concept of MS as a condition goes way back. And I think Readathon’s been very much a part of that, you know, over 45 years of this event. And it’s not small numbers, you know, we’re talking about tens of thousands of people each year. So therefore, over that time period, you know, literally hundreds of thousands, if not millions of people have been touched by the MS Readathon experience and I think that has greatly helped the, at least, awareness of MS. And for those who are even more curious, maybe a deeper understanding.
Jeremy Henderson
That’s excellent. Rachel, so David has just sort of mentioned then that the MS Readathon really is generational. Grandparents and parents pass the baton to their kids, who as adults pass the baton to their offspring and so on. Was that your experience, Rachel? You live with MS, but did you participate in the Readathon as a child? And how important was it for you to get your kids involved in the Readathon?
Rachel Kerr
Yeah, I did, Jeremy. I was an avid reader as a kid, so the Readathon was absolutely made for me. I had a really, yeah, I really enjoyed it. I think it made it a little bit easier than when I was diagnosed, just that tiny bit of awareness around the fact that MS exists and that I hadn’t heard of it before. Certainly not easy, but you know, it wasn’t entirely new territory.
So once my kids got old enough, to read or even go through books together, they were straight on board with the Readathon. And we have been really lucky along the way, I guess, with their teachers and support crew as well who get on board with that. And they can log their reading or their Readathon books as their homework books and things like that. And even last year, my son’s teacher got involved and made it a class-wide competition to see who could read the most books and things. So yeah, it’s been amazing to see something that I did as a child then, being now participated in by my kids.
Jeremy Henderson
Thanks, Rachel. David, I wonder if we can talk just briefly about the importance of the Readathon in terms of the community, the people that the Readathon supports, and it supports people living with MS and other neurological conditions. For those of us who might not be familiar, I wonder if you can help us understand what we’re talking about when we’re talking about other neurological conditions and how common they are in Australia.
David Curd
Yeah, thanks, Jeremy. And look, certainly, you know, it is the MS Readathon. You know, that is certainly the focus of the event. It’s its history, its legacy. But we also, you know, have come to understand that there are a range of neurological conditions like MS that share many things in common.
And actually, when you start to bring them together, you start to appreciate that the prevalence of neuro conditions in Australia, let alone worldwide, is profound. And so, you know, the sorts of conditions that we’re all familiar with individually, but then when you start to bring them together, you know, dementia, Parkinson’s, epilepsy, motor neuron (disease), Huntington’s, stroke, and MS, you know, just to name a few, there’s, you know, well over 100 neuro conditions, you know, there’s some very specific ones, muscular dystrophy, for example.
But the really, I guess, telling factor is that in Queensland that equates to 1.3 million people who are living with a neurological condition. But given MS Readathon is a national event, it’s actually 7 million Australians. So, one in four people are living with a neurological condition or will live with a neurological condition. And that also means that, you know, of those 7 million Australians, that’s also 7 million families.
And really the long story, the short version of that long lot of data is everyone knows someone who is living with a neurological condition and hence broadening the reach of MS Readathon to say, MS is one of those really interesting neurological conditions, but a better understanding and kindness and better support for people with neuro conditions is a real…is really important now for Australia and other countries – because it’s growing as a cohort; there are more people as we live longer, more people are running into the neuro conditions around ageing. But then a lot of those neuro conditions as Rachel has experienced, particularly MS, average age of diagnosis is 27, 70 per cent is female. So, there’s, you know, it’s not things you get when you’re old.
You know, we have a wonderful young lady who works for us. She was diagnosed Christmas Eve at the age of 15 in Townsville. And so, and these and it looks and it’s invisible, initially, it’s you you’re still very much who you are, but something’s not quite right. You know, a parent’s not quite right or a friend’s not quite right or a brother or sister is not quite right. And often, unfortunately, it’s quite a process to get to a diagnosis because, you know, it could be a whole lot of things but in actual fact, it’s a lifelong neurological condition. And I’m really proud that the MS Readathon is leading that conversation to say that, you know, MS is one of the really important neurological conditions, but neuro conditions is something that as a community, we need to understand more and also be better at connecting people to the support they need.
Jeremy Henderson
Thanks, David. I think one of the really exciting things about the MS Readathon is, and we’ve spoken about its value in increasing awareness of MS, and we’ve spoken about, obviously, its critical importance as a fundraiser, but it’s also really, really valuable in encouraging and promoting literacy and encouraging people’s children’s interest and participation in reading. So, I wonder, Rachel, if we could speak about that.
Why do kids enjoy participating in the MS Readathon so much?
Rachel Kerr
I think that it gives them a purpose for their reading. I know when my kids were little and struggling and learning to read, they found it quite, they found reading quite difficult. Whereas knowing that they were doing it for the MS Readathon, they were more inclined to power through and keep trying. I think that once they have a couple of them and their friends participating, there’s absolutely that sense of competition there – with their friends and you know who can read most books and who can read harder books or bigger books.
I think as well with the, especially with the younger kids, but with a few of the kids that I’ve spoken to it’s something that Mum and that your Mum and Dad and the child might do together, so they might go through and they might read a book together and I’ve actually spoken to a couple of adults along the way who say that they were never fans of reading but since helping their young ones do the Readathon, it’s become something that they’ve kind of bonded over and added in those, whether it’s a bedtime story at night or whether it’s reading a chapter, you know, every weekend or whatever with their child. But it’s added reading to their lives, in some way more than it was beforehand, which I really love as well.
Jeremy Henderson
Rachel, what benefit or what impact have you seen within your own family and your own kids taking part in the Readathon?
Rachel Kerr
There is a strong competition in my house with Readathon. There is a strong competition in my house between my two kids with almost everything on any given day.
David Curd
I wonder where they got that from, Rachel?
Rachel Kerr
I think it’s their father, David.
David Curd
Yeah, yeah, of course.
Rachel Kerr
All Shannon! So Iook and absolutely we feed that and help them along. So, they will stockpile all of their books that they’ve read. And for them, they live a life with MS. They are at all of my events with me, and you know doing advocacy and that’s been their life forever and a day. But they especially at Readathon time and at our other key fundraising event times they really bring their friends along. So, I was talking to my daughter this morning who’s going to school today to attempt to get a spot on Parade (kids wear their favourite book character costumes). Jeremy if you’ve ever met my daughter she will get that spot, I would suggest, to discuss MS Readathon and to bring people on board.
So, I love seeing that for them, that they’re taking that passion and running with it, because the more people who are involved in finding either better treatments or fundraising or advocacy for people living with MS, the brighter our future looks and for all of those neuro conditions that David mentioned, that are increasing all of the time. So.
David Curd
I think Rachel’s really, I think touched on something I think is really profoundly important about MS Readathon, which is ironic for an old event that’s about books. And particularly, the relationship now to neuro, because for me, what I’m finding, I think it’s…really comes down to about connection. And one of the things neurological conditions also have in common is the loss of connection, and not just from the brain to the body, but also from the person to the activities and the life that they were living. And all of a sudden, there’s challenges about that and people not understanding that. And you’re not able to do some of the things you were able to do. And people don’t quite understand why, and particularly something like fatigue, you know, “oh, you’re just tired.” And it’s like, yeah, I know. But I’m living with something that makes me really fatigued. And it’s not I couldn’t be bothered. It’s I really want to do it, but I can’t do it or enjoy it to the extent I do. And I actually think maybe something like Readathon, you know, you know, is finding another role that it’s playing, which is actually facilitating connection, you know, between a parent and a child, between siblings, between friends.
And I think also really importantly, potentially, you know, you know, a grandchild to a grandparent and maybe that grandparent has got early-stage dementia. You know, maybe they’ve been dealing with some other things. And I think we lead such busy lives, you know, it’s easy to be on a device, you know, in your own world and be somewhat disconnected, ironically, even though you’re digitally connected to things, but maybe not real things, but people actually pausing to sit down, read a book, share, share about a book.
And I think we’ve even had wonderful stories about, you know, seniors’ book clubs or just book…mums’ book clubs. You know, where people are finding that the concept of connection seems to have a lot more importance nowadays in a world where we might feel a little bit disconnected ironically, because we’re, you know, we’re so somewhat isolated because of the devices we use so often.
I think there may be a renaissance of Readathon as a means for connection, which I think sits beautifully with the cause because neuro is about being kinder and more understanding and making sure people don’t feel that they’re dealing with these common conditions alone. And if Readathon serves that purpose through a story and storytelling, because maybe the book is also a story and a memory that’s been shared as a result of a book. And I just think there’s so many untapped, beautiful elements of Readathon that may come into their own, you know, in its 50 plus years.
Jeremy Henderson
Thanks David. Rachel, speaking of stories and clearly you and your family are very much leading by example when it comes to Readathon, but there’s also I believe some really great stories out there about why kids get involved and how they’re participating in Readathon. I was wondering if you wanted to share some of those with us.
Rachel Kerr
Yeah, absolutely. So there are some amazing stories out there and I know that the Readathon website and in emails share quite a few stories, but I’m going to touch more so on some of the local stories that I’ve heard which is where I’ll talk to a mum – or a child – of a kid who will not pick up a book all year. They will fight mum or dad at reading time every single night regardless of homework. Come Readathon where there might be incentives and avatars and cool things that they can compete for; they are jumping into reading.
I’ve had mums come up and give me a hug and go, thank you so much, because for at least one month of the year, my kid is happy to do their reading, is on board, and is sort of building some of that habit. But look, we’ve got some amazing fundraisers out there who have done awesome work, especially when we’re considering that a lot of these are quite young people.
We’re not talking about adults who might have a workplace to, you know, or an extended network to tap into. We’re talking about kids and fairly young kids here who are getting some astronomical fundraising totals and smashing out of the park with their actual reading tallies as well. It’s just amazing to see. Sorry, I know I touched on it before, but as someone living with MS and in that advocacy space, it makes me feel quite good to know that that next generation coming through is already a strong set of advocates and fundraisers. We don’t need to wait until they’re older and are doing a great job. They’re already absolutely killing it.
Jeremy Henderson
Excellent. Let’s talk about the nuts and bolts of the MS Readathon and how people get involved and how the Readathon works. David, I wonder if you can share with us a little bit about how people listening to this podcast can get involved in the Readathon if they’re interested.
David Curd
Yeah, for sure. Look there’s a terrific website. So www.msreadathon.org.au
So, it’s not a Queensland event or a Victoria event. It’s a national campaign. One website to go to. You jump on there. You can register as Rach said. There’s some really cool elements to that with avatars and it’s got a bit of a game factor to it, as opposed to just signing up to something.
And then, you know, obviously once you register, then, you know, you can reach out and invite people to support you and donate. People can just donate straight up. But ideally, you know, there’s someone doing the Readathon that they want to get behind and, you know, they’re fundraising targets. So that’s one means. So that’s probably the easiest means through the website. Also, it’s terrific to have QBD online supporting the event this year.
So, if you purchase a book through QBD ONLINE BOOKFAIR, 15 per cent of the books sold that go through the Bookfair go to the MS Readathon. So that’s awesome now that we’ve got these sort of iconic, you know, book suppliers getting behind Readathon. And so that’s another means if people don’t go to the website, you’ll connect with us through QBD. So, it’s actually pretty easy, Jeremy. The good thing about having an event with that many people is, you know, they’ve ironed out a lot of the bugs and if there are any bugs then just, you know, send a question and then it’ll get tidied up and away you go.
Jeremy Henderson
Fantastic. And we’ll put all of those details in the show notes of this podcast for people keen to take part in the MS Readathon. Rachel, again, your family’s obviously very, you’ve managed to harness your family in support of MS Readathon and they’re participating enthusiastically and successfully. What’s the key for parents to get their kids on board?
Rachel Kerr
Look, I think that once you’ve got one of the kids, whether it be in a class group or a sports team, then the rest of them seem to be really, really keen to get on board. So, they can have that little bit of friendly competition and banter as to, you know, as I said, who’s read more or who’s got more books or whatever. And I think it’s like with so many things that we do, I think it’s just keeping those conversations running. So, I know that after the first year, even with how small my kids were, they were asking me from about January the following year when Readathon was again and when we could sign up for it. So, it’s effectively in the calendar for a lot of us, certainly in a lot of our close network. And as I said before, my kids are working their way through adding it to their friends’ calendars as well.
But the other thing that I really love about Readathon is a lot of your MS fundraisers that we, that I do, that we do, are physical activities whether it’s swim or walking or cycling. One thing that’s come past me about a million and one times is that all of those events can be really hard for someone with MS to participate in. So, either their family participates without them in some cases and then again like David said before with those connections you’re kind of losing those in some instances or you know, they’re participating but they might not feel great afterwards for a few days or more.
So, I love the Readathon because there is also no barriers to participating. So, audiobooks count, you know, your digital books count, all of those sorts of things. They all, they all count, they all add into your Readathon. So yeah, as a family, it’s something that’s not necessarily limited by what you physically can do and on a particular day. And you can do it in your own time. So, if you’re a busy working family and you’ve only got an hour free on Saturday, you can still, you can do it in that time. You’re not bound by anyone else’s event timelines. So, in terms of family friendliness, that’s the other thing I quite love about it and the positive feedback that’s come back through me as well.
Jeremy Henderson
Thanks Rachel. Now this next question, I suspect I know the answer to this and I’m going to ask you about what your children’s teachers think about the MS Readathon or what teachers think about it more generally. But I imagine they’re incredibly supportive of anything that is encouraging children to read.
Rachel Kerr
Absolutely right, Jeremy. They are so keen and so keen to be supportive however they can, to help the children get on board and get reading. But yeah, anything that’s getting kids to read, even if it’s one more book for the month, they are absolutely on board. Yeah, all of the teachers that I’ve spoken to so far along the way are very, very excited about the Readathon when it comes around because it’s one more, I suppose, road that they can use to get kids reading a little bit more.
Jeremy Henderson
David, I wonder if we can talk now about the fundraising aspect. How much are we hoping to raise this year with the MS Readathon?
David Curd
Yeah, look, it’s tough fundraising nowadays, Jeremy. We really appreciate that, you know, cost of living and, you know, interest rates and all those sorts of things that are impacting on families particularly, that, you know, finding those extra dollars to make a donation, we get that. But we also want to reassure people that that money is so well used. It absolutely goes to the things that aren’t funded- you know, by any other means, not funded by government, not funded by NDIS.
We’ve got a target this year of 1.3 million, you know, which is a lot of money. And, you know, but it’s, it’s, it’s achievable. We’re hoping to have, you know, over 18,000 people do the Readathon. It’d be great to smash through 20,000. We’ve already got 10,000 people signed up already. So, you know, we’re halfway there. And so, you know, with that number of people, and if we can build that groundswell of support – if it’s not just about kids reading books, if it’s about parents, book clubs, grandparents, kids reading to grandparents or just grandparents having a read. We really want to broaden that reach and so ideally the participation numbers can lift over time as well. And then if people can find that $5, that $10, that $20 and ideally more.
Please be just assured that all the MS Organisations put that money to such good use and for the things that aren’t funded by any other means. So, it could be helplines, it might be a MS nursing service, helping people understand the NDIS, info lines, allied health that people can’t afford to have, particularly something like physio that assists people’s mobility.
It just makes, you know, an immediate impact, you know within days within weeks not, you know, in three years’ time, “Has anything happened with, with those funds that were raised?” They hit the ground very quickly and I just want to reassure people who are listening to this podcast that you know, this is one of those causes where the dollar hits the ground and makes a difference without question. So, that’s what we’re aiming for: 1.3 million,18,000 registered, we’re 10,000 on that way there now. You know, annoy colleagues, friends and family for donations, send them the link, tell them you’re doing it and, you know, who knows, we might be able to bus past the 1.3 as well.
Jeremy Henderson
Excellent. Rachel, I know you’ve got some big things in store in terms of the MS Readathon program this year and one particularly big thing, you’ve got a superstar children’s author lined up. I wonder if you can tell us a little bit about that.
Rachel Kerr
Yes, this year’s program is, as you said, super exciting. So, we’ve got Andy Griffiths on board. So, he is the author of some amazing books including the Treehouse (Storey) stories books. And he’s a long-standing MS Readathon Ambassador. So, we’re so glad to have him back on board again. So, he recently flew to the Gold Coast and did the launch of the MS Readathon. And he did two book reading sessions with over a thousand kids.
So, look, we love having anyone on board who is keen to help, but especially someone who people love their books as much as they do love Andy’s books. It really, makes a huge difference as well, because people are keen to be anywhere near Andy and his books a lot of the times.
Jeremy Henderson
That’s brilliant. If anyone was going to encourage children to read, it would be Andy Griffiths, I’d imagine. So, perfect alignment with the MS Readathon. David, we’re still in 2025, but I’m curious whether you’re starting to think about the Readathon in 2026 yet, or is that future David’s problem?
David Curd
No, no, no, no. Look, well, actually, future David has very poor ideas, Jeremy. I grew up in the time of, know, slate: slates and chalkboard. And I think it was the adventures of Dick and Dora and not much else.
So, I think it’s a really exciting time for Readathon because as Rach said, you know, there’s different forms of books and reading now. Reading is way more inclusive, you know, back in our day, my day, Jeremy, you could read, or you couldn’t read.
Whereas now, you know the access to reading is so much more developed and so I think that’s wonderful having authors like Andy Griffiths you know come on, is just made you know reading cool and it’s interesting and it’s relevant. You know, we’re not reading stories from other lands, so much and it’s stories about the lives that people lead that we can relate to. Partners like QBD.
So, I think we want to broaden the relationship that Readathon has, and I think double down on the connectedness that it can create, and it’ll be anchored in the loveliness of young children taking up the love of reading and some highly competitive ones in Rockhampton doing the love of reading Rachel, but they had genetically no choice!
But I think the thought that it could also be about kids reading their books to their grandparents, their grandparents telling them stories and building that sense of community and connectedness. I think there’s so much potential for that, Jeremy. So, if anything, it’s only 47 years old, but it’s about to have a renaissance. It’s already started. And I think there could be something just each year that’s just another innovation. And ideally, rather than an MS Organisation decides what’s happening with Readathon, that the Readathon community decides what’s happening with Readathon and brings their ideas and their elements. And as long as we can fit it into the website or manage that through registration, I would like to think it’s pretty limitless, ideally.
Jeremy Henderson
It is such a wonderful initiative, you know. It’s this triple threat. You’ve got the awareness raising piece. You’ve got the fundraising piece. You’ve got the literacy piece. David, you spoke about its value in building connections and Rachel, you spoke about, you know, it’s such an inclusive activity that everybody can take part in and really bringing people together. And then we talked at the start of this podcast and just to bring this sort of full circle, we talked about this legacy and that you know, MS and the MS Organisations around the country are really, you know, we have this legacy piece where, you know, generations of Australians have had experience with Readathon and this exposure to MS, even if it’s just in this small way, to the point where the, what we affectionately call the, you know, the red, the MS red box is something that people are familiar with.
So that legacy piece is so important and it’s so exciting to hear that you’ve got such great plans to continue to build the MS Readathon going forward David.
David Curd
Yeah, thanks, Jeremy. And I think maybe MS inadvertently is, you know, it led the way, you know, over 70 years ago when a lot of the MS Organisations were created from families, by the way, not from government. You know, they weren’t someone decided to create a charity. It was actually families getting together saying, you know, these people need help.
And maybe, you know, the leadership that was shown back then and the passion that was shown, I think is going, is happening again now with neuro where it’s like this is what’s made a real difference with MS as a neuro condition. And, you know, let’s shine a light on those other neuro conditions along with MS and, you know, make sure that we, we help build connection and community. And I think that the lovely history of Readathon is a nice thread to, you know, tie those stories to and, and broaden that awareness beyond MS. I think there’s a lot of trust and, you know, recognition around the red box, as you said.
And if that encourages people to go, yeah, and these other neuro conditions also deserve and require that sort of attention and support. And they’ve got great organisations behind them as well. So, we’re not trying to be that. We’re just trying to say, let’s shine a light on this. And if we can do that through reading and through this iconic event, then that’s a good thing.
Jeremy Henderson
Thank you to both our guests today. Thanks for joining us for our special episode to spotlight the MS Readathon. Its history, its legacy, its impact on awareness raising and how the program works. For more information about the MS Readathon, you’ll find all the information in our show notes. Make sure you join us for the next episode of The Raw Nerve.
Voiceover
Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
