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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. Welcome to The Raw Nerve. I’m your host, Jeremy Henderson. We’ve got a great episode for you today. We’re fast approaching our favourite month of the year. Today we’ll be talking about all things May 50K. The May 50K is our flagship, national fundraising event. Held each year in May, The May 50K raises much needed funds for MS research.
Since its launch in 2019, The May 50K has raised $23.4 million. Last year, in 2024,13,000 participants raised $2.4 million to support life changing research into the prevention, treatment and finding a cure for multiple sclerosis. The May 50K is an inclusive fitness challenge, as you’ll discover today, that is tailored for everyone and undertaken by thousands of Australians around the country, who raise funds to help leave MS where it belongs and that is behind us.
Joining us today in the studio we have four super passionate May 50K champions and participants. Our first guest Rohan Greenland needs no introduction. Rohan is the CEO of MS Australia, occasional host of The Raw Nerve and one of our most enthusiastic champions of The May 50K. Welcome, Rohan.
Rohan Greenland
Thank you very much, Jeremy.
Jeremy Henderson
Dr Tennille Luker, another one of my colleagues, is the Deputy Head of Research at MS Australia and like Rohan, is a passionate May 50K participant. Welcome Tennille.
Dr Tennille Luker
Thanks Jeremy.
Jeremy Henderson
Also joining us today we have Sophie Drummond from MS Plus. Sophie is the Campaign Manager for The May 50K. Sophie lives with multiple sclerosis and is a May 50K participant. There’s no one better to tell us about The May 50K and how you can get involved. Welcome, Sophie.
Sophie Drummond
Morning. Thank you for having me.
Jeremy Henderson
And I’ve saved the best to last. Our fourth guest today is Anne-Maree O’Neil. Anne-Maree lives with MS and is a fundraising superstar. In 2024, Anne-Maree was The May 50K’s top fundraiser, raising over $25,000. Since 2023, Anne-Maree has in fact raised over $45,000 in total for MS Australia. This year, she’s once again looking forward to taking on the challenge and to bringing her Ballarat, Victoria community along with her. Anne-Maree, congratulations and thank you and welcome to The Raw Nerve.
Anne-Maree O’Neil
Thank you.
Jeremy Henderson
Rohan, I wonder if we can start with you and just…if I can talk to you about the significance of The May 50K program to MS Australia. As I said in the introduction, it’s our single biggest annual fundraiser for MS research. Why is The May 50K so important to our work?
Rohan Greenland
Well, it is the single largest fundraising event we have. It’s a fantastic event and I think it brings together so many critical elements. It fuels our wonderful researchers in Australia and provides them with the ability to do what they do best. And that is drive research into cures, into better treatments and a better understanding of MS. And Australia really is important and the research that we fund through The May 50K is important because it’s globally significant. We have some of the world’s leading researchers right here. They’re globally connected, working collaboratively, to really get us down those pathways to cures further and faster than we would otherwise do.
Jeremy Henderson
We talk about the urgency. Why do we need to supercharge the MS research fundraising?
Rohan Greenland
There is just so much happening and multiple sclerosis is a disease that we really can and will beat in time. But for people living with MS, you know, the ability to…we still can’t reverse the damage that is being done. And it really is so important to be able to do that, to be able to help people who already have significant challenges with their MS.
And the ability to actually get on top of this disease and reverse the damage is, is something that’s in front of us. We’ve had some fantastic advances, but we still can’t reverse damage. And that’s something that, you know, we need to keep the pedal to the metal and to really do all we can to keep pumping money into our wonderful researchers to, to, to achieve that, that great goal and that great challenge.
Jeremy Henderson
Thank you, Rohan. Sophie, I wonder if you could just let our listeners know about The May 50K. How does The May 50K challenge work and how do people get involved?
Sophie Drummond
Absolutely. The best thing about The May 50K is that it’s a virtual challenge, and it can be completely tailored to the level that you want it to be at. So, if you want to walk 50 kilometres in May, if that’s your goal, then you can do that. Whereas if you want to run 150 kilometres in May, you can do that and you can do that anywhere in Australia and actually anywhere in the world, which is really great…it makes the campaign super accessible and it means that people with various different levels of fitness can join and get involved.
Jeremy Henderson
Last year we raised $2.4 million for MS research. What’s the target for 2025, Sophie?
Sophie Drummond
We want to raise $2.5 million for MS research this year.
Jeremy Henderson
Excellent. And how do people register? Is it really easy to get involved?
Sophie Drummond
Super simple. All you have to do is go to themay50k.org and sign up. It’s a very quick registration process. It’s completely free to sign up and you can create a team, you can get your friends and family involved. It can all be done in the registration process very easily on your phone or on a laptop.
Jeremy Henderson
Thank you. Tennille, if I can come to you and just…talk to you about MS research. Why is MS research so important?
Dr Tennille Luker
MS research is crucial because it’s such – MS is a such a complex neurological condition that lacks a cure. So, symptoms vary widely from being completely invisible yet debilitating. So, things like pain and fatigue, to visible such as mobility issues. And each person experiences the disease differently, making its impact far reaching. So, with the prevalence of MS rising at an accelerated rate, research is essential for improving treatments, understanding the diseases’ mechanisms and ultimately finding a cure and preventing MS.
Jeremy Henderson
How exactly do we use the funding that comes from The May50K to drive that world class research in Australia?
Dr Tennille Luker
Yes. So, the funds from The May50K are invested into MS research using two different approaches.
The first is through our investigator-led funding program. So, this provides funding opportunities, to support innovative projects led by MS researchers. So, this year, for example, we awarded over $5.7 million across 35 projects.
The second approach is through our national collaborative platforms. And the beauty of these platforms is that they promote collaboration. They prevent duplication of research and accelerate the progress of research because we have many brains working together.
And then we have a several new platforms that are quite exciting. So, PLATYPUS which is the Australian arm of the UK OCTOPUS trial, which aims to identify repurposed drugs for the treatment of progressive MS. And, you know, as you know, Jeremy, progressive MS is a particularly challenging form of the disease with limited treatment options. So this trial’s innovative because it uses an adaptive design allowing testing of multiple drugs simultaneously. And the trial can be adjusted based on interim results. So, this approach actually increases the chances of finding effective treatments quickly. And the good news is that the groundwork for this trial has been laid, and we’re expecting our first participant shortly.
And finally, our most recent platform that was launched is EBV (Epstein-Barr virus) …EBV and MS, which was launched at our symposium last year. It…this platform deepens…will deepen our understanding of EBV’s role in MS development and progression, as well as its potential as a target for prevention and as a treatment option.
Jeremy Henderson
And the investment that’s coming via The May50K, the fundraising that’s happening on the ground throughout the month of May is just so critical to, to boosting those research efforts. So, thank you Tennille.
Anne-Maree, I mentioned in the introduction you were The May 50K 2024 top fundraiser. You’re now back for your third year. It’s so exciting to have you back on board again; so, thank you. Your story is one that’s similar to so many people with MS – in the prime of your life, starting a family and diagnosed with MS. Why did you choose to participate in The May50K and I guess the bigger question I’ve got for you is, how have you been so successful in managing to get the entire community, to support your efforts?
Anne-Maree O’Neil
I had a really bad year, one year. And coming out of that, I felt like I needed to do something greater than myself. And I had an email come across my desk, to do The May50K, and I sort of thought, well, I can do 50k in a month. And then a few days later I just had this overwhelming feeling that I needed to do something greater than that.
So, I set myself a goal of 500ks for May, with an expectation of raising $5,000. Ended up doing 560 kilometres for May and raising, I think it was over $18,000. So, after that it opened my eyes to what I was actually able to do. It’s a very empowering place to be. So, 2024 I set another goal of 500k, doing 533k and adding an MS Walkathon in there for the City of Ballarat.
The City of Ballarat has been extremely generous hanging the post…my posters around town and yeah, the community spirit has just been overwhelming. So lately, since the start of April, I’ve been using The May 50K app. Logging my kilometres and those kilometres have involved starting at 6:00 every morning, walk, running to restaurants, coffee shops, people that have requested to hang the posters and yeah, they’ve, they’ve been absolutely wonderful receiving the posters…I have a chat with them…what MS actually is and yeah, the end game to what we want to achieve.
Jeremy Henderson
Anne-Maree, thank you so much for your efforts. I know in the past you’ve had difficulty walking and you also experience, you know, regular pain, yet you’re still able to walk hundreds of kilometres throughout the month of May for The May 50K. It’s an incredible effort. How do you manage it? How do you get through that?
Anne-Maree O’Neil
Even as of today, I have pain with every step that I take. The way I overcome that is the end goal. It’s the end game – to find a cure.
Jeremy Henderson
Rohan, I think I know the answer to this. I want to ask you about what you’re, you know, you’re a keen participant and have been for many years in The May50K and I was going to ask you, you know what you most enjoy about the event, but also what inspires you. But I suspect I know the answer to that and it’s people like Anne-Maree.
Rohan Greenland
It absolutely is. And I run for my cousin Claire. Claire has primary progressive MS, and I also run for my niece’s partner Joe, who has relapsing remitting MS. But…but they are my inspiration. I every step I take, I take for them. Every dollar I raise, I raise for them. They’re just the most beautiful people. And they spur me on, every kilometre and every dollar I raise, so they’re my inspiration. Anne-Maree is my inspiration too. And honestly, it’s the community. The MS community is really very, very special. I meet so many wonderful people in, in my work – it’s just absolutely fabulous. The, I think The May 50K embodies all of that.
You know, I join the Facebook groups, and I talk to so many people. I meet as many people as I can who are participating or supporting The May50K and it’s an unbelievably engaged community. It’s an optimistic community. And I think the, the cause is so good. The research community is so dedicated to the work they do, and they’re just wonderful, wonderful people.
It is a whole community. And I think, the enthusiasm, the optimism and the warmth from that community is just so inspiring. And it’s certainly, you know, as you said at the beginning, I really look forward to May every year, it’s, and the build up to The May50K, it’s an exceptional event.
Jeremy Henderson
Thank you. Rohan. Sophie, a question for you. I know we’ve got so many inspiring people that have done The May50K in the past, and obviously we have one incredible champion sitting right next to you there in the studio. But I wonder if there’s some other inspiring stories out there that, you know, have come across, you know, your desk and ones that you’re really, you know, inspired by and would like to share with us today.
Sophie Drummond
Yeah, absolutely. Something that we do every year that’s really important is we gather a group of ’May50K Motivators’. So those are people who have really fantastic stories. And, you know, we usually try and engage with people who have taken part in the past and are really, you know, we know them because they’ve been sharing their stories.
So, Anne-Maree is, of course, one of our incredible May50K Motivators this year. But we also have some other fantastic stories of people who are, pillars of The May50K community who are constantly getting involved with The May50K.
One of those stories is Chris and Charlene. Charlene was diagnosed in 2019, and Chris has participated every year since 2019 except for last year, where he unfortunately had an injury. But he was still on the community group. Motivating everyone, getting everyone excited. His family was still all involved. So, he’s back this year for another fantastic year. And we just love seeing people like that who are always motivating everyone and really helping to bring that community spirit alive. So, that’s a really just beautiful story of Chris and Charlene, who are, you know, doing everything they can to raise money and, find a cure for MS. That is their ultimate goal.
Jeremy Henderson
Anne-Maree, congratulations again. You’ve been so successful with your May50K fundraising efforts. Why do you think you’ve been so successful? And why do you think you’ve been able to get the community in Ballarat to just donate so generously to your efforts?
Anne-Maree O’Neil
I think, well I was diagnosed with MS in the year 2000. I’ve had lots of times in my life where I haven’t been able to walk or talk…rehabilitation. I’ve had amazing family and friends who have helped with these times in my life. And I suppose I come from a time where there was never online grocery shopping or anything online.
I remember one day walking down the passage – our passage at home that should have taken five seconds. It took me 20 minutes. People have been witness to this, and I think that has then helped engage with the realness and the, the feeling of in my heart that I just want to make a difference and it, it has given me a lot of strength to not withhold myself in asking the community for help and to find a cure.
So, I’ve been walking every morning. I normally do 13/14 kilometres every morning for my own health. And I remember after the first May 50K Rohan sent me, Rohan Greenland, sent me the most beautiful letter and I was asked to then receive a phone call from him two weeks out from receiving the letter, and he asked me, “Anne-Maree apart from the fundraising, apart from meeting all these amazing people, what have you found yourself throughout this month of May50K?” And he said, I said to him, well, it’s actually the extra exercise that makes a difference. And he said, “well, that’s incredible because we’re doing a lot of research around that currently at the minute.” So, for me, it’s okay to be a part of The May 50K. But I keep on my Instagram and LinkedIn profiles, updates of my life every day of walking, running 13/14 kilometres every day to say, hey, this is actually my real life. This is what I do to keep myself healthy and able.
Jeremy Henderson
Thank you, thank you Anne-Maree. Sophie I can see nodding. You wear many hats. As we said you’re the campaign manager for The May50K. You’re somebody living with MS, you’re also a really passionate May50K participant. You’re seeing the same things, I’m imagining, on the ground. And how does that make you feel both professionally and also personally as somebody living with MS, to see the community respond the way it does?
Sophie Drummond
It’s just amazing to see the impact that this event has on the community. I would say, yeah, from a personal perspective, that reminder about exercise and keeping healthy and feeling grateful for that mobility and that ability to go out and walk and do these kilometres is such an important part of May. You know, it is such an incredible month where people really do connect with themselves and their health in various different ways, in whatever way that means for them.
And I think, you know, hearing that you walk every single day Anne-Maree, that’s amazing. That’s such a that’s such an amazing story. And I think, yeah, it’s such an incredible reminder of those positive benefits of exercise…that…you can forget when life gets really busy and hectic and stressful and it’s very grounding to have a month where you’re really focused on your movement and making sure you get out there. As well as the fundraising and spreading awareness, it really is just a really special time.
Jeremy Henderson
Thanks, Sophie. Tennille, I wonder if we can ask you a question about the priorities of the MS community. We know from the work that we do at MS Australia about what is most important to Australians living with MS, and that, that is investment in MS research.
Dr Tennille Luker
Yeah, absolutely. So, we prioritise research that addresses the most pressing needs of the MS community. And this is guided by comprehensive surveys, to ensure that our efforts align with what matters most to those affected. These priorities include understanding the causes of MS, improving treatments and care, and exploring strategies to prevent and ultimately cure the disease. So, we’ve run this survey again this year, with results to be finalised at the end of the year. And these insight…insights may actually influence what priorities we fund in the future.
Jeremy Henderson
Sophie, I can see nodding. You’re as excited to be, you know, stage managing The May50K as you are to be participating in The May50K. What does it mean to you to participate in the…in The May50K, and why do you find it such an enjoyable challenge?
Sophie Drummond
Oh, I just have to agree. I think the community that takes part in this event is beyond. It is such an incredible community. It is so positive. Everyone is so uplifting and taking part, you can post in the community group and talk about your ten-minute walk that you went on, and people will tell you that you’ve done a fantastic job and that you’re working really hard to do something amazing.
And that is something that is really rare these days. It’s really hard to find that positive, uplifting community. And having that around The May50K is so, so special and it makes people want to come back and do it again every single year.
Jeremy Henderson
Thank you, Sophie. Tennille, I wonder if I can ask your perspective as a research expert on the impact and benefits of exercise for people living with MS and other chronic conditions? Because people that are participating in The May50K are not just raising money for MS research, but they’re also exercising and doing something really, really positive for themselves as well.
Dr Tennille Luker
Yeah, absolutely. So, both physical activity and exercise play a crucial role in improving the health and wellbeing of people living with MS and chronic conditions. So, physical activity refers to any movement that requires energy, such as walking, household chores or recreational activity. While exercise is structured and planned, structured and planned form of physical activity aimed at improving or maintaining physical fitness.
So regular physical activity, activity helps maintain mobility, muscle strength and balance, while also supporting cardiovascular health. It also has cognitive benefits, so improving memory and processing speed, which is particularly important for people living with MS. Exercise, as we know, is quite vital for mental health, reducing symptoms of depression, anxiety and enhancing overall quality of life. And importantly, exercise can help manage common MS symptoms such as fatigue, muscle spasticity and pain.
So, I think the key is a tailored approach. Depending on your abilities and combining aerobic exercise, strength training, flexibility and balance exercises is what works really well for people living with MS. And also, MS Australia will be releasing new resources shortly for people living with MS that provide evidence-based information about modifiable lifestyle factors. So, lifestyle behaviours that can be modified, that can influence MS symptoms and progression. So, there’s information about physical activity and exercise. So, watch this space.
Jeremy Henderson
Thank you, Tennille. So, Sophie just coming back to that idea of the…the beauty of The May50K in as much as it can be really, really tailored to the individual. And it’s about, you know, working out what you can do, in terms of how you do those kilometres. I wonder if you can just speak a little bit more about that.
Sophie Drummond
Yeah, absolutely. I think the best thing about The May50K is that you can pick whatever you want to do to complete your kilometres, and if 50 kilometres is out of reach, you can absolutely change that and customise your goal to be whatever works best for you. And we really hope that this campaign can be inclusive and accessible to every single person, whether you’re living with MS, if you know someone with MS, if you just want a physical challenge to get fit and give back to the community, that’s the beauty of it. You can really do whatever challenge you like.
Jeremy Henderson
Thank you, Sophie. Now, Rohan, you’re both our CEO and the number one supporter of The May50K, so I’m going to give you the last word.
Rohan Greenland
Well, this year, I’m, attempting to bookmark my May50K with two half marathons, one in Sydney at the beginning of May. And the last one, something I’ve always wanted to do and never done it, but to, to actually run the Arctic Half Marathon in Greenland. On and that’s on World MS Day. So, I’m bookmarking my May50K with those two half marathons.
I run with arthritis, and it makes running a bit of a challenge. I know that the pain associated with my arthritis is nothing compared to the…the challenges of people living with MS, but, as long as my arthritic joints hold up, I’ll be bookmarking my May50K with…with these two iconic events. And, really, aiming to raise as much as I can, throughout May, again, having it bookmarked by two challenging half marathons.
Jeremy Henderson
Thank you to our guests today for their expertise and their enthusiasm discussing The May50K. Thank you, Rohan, Tennille, Sophie and Anne-Maree. The May50K is a wonderful event and it’s so essential for MS research. Participants improve their fitness, there’s team bonding, it gets people away from their desks, improves physical and mental health, and of course helps raise valuable and much needed funds for MS research that will help us put MS where it belongs, behind us.
You can find more information about signing up to The May50K in the show notes for this podcast episode. Thank you for listening to The Raw Nerve.
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