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.
Rohan Greenland:
I’m Rohan Greenland, and I’m the CEO of MS Australia and this is The Raw Nerve. A big welcome to you all and today we’re talking about a really important topic, and that’s The May 50K. The biggest single fundraiser for MS research that we hold every year in May. And joining me today, we have two very, very important people. First of all, a big welcome to Sophie Drummond. Sophie Drummond is the Senior Campaign Coordinator (at MS Plus), and she looks after and runs The May 50K. Sophie also lives with MS. She’s a May 50K participant and is based in Sydney. And she has a passion for community building and using social media for positive change. So a very big welcome to you Sophie.
And also I’m delighted to have with us Dr. Tennille Luker. She is Deputy Head of Research at MS Australia, oversees the Australia and New Zealand MS Genetics Consortium, which we call ANZgene, but also has responsibility for communication of research information. And Tennille assists the research funding and coordinating activities of MS Australia and like Sophie is Sydney based and a May 50K participant and a very enthusiastic one. So first of all, I want to introduce Sophie. A huge welcome to you Sophie, and thank you so much for all you do. You’re a madly enthusiastic manager and promoter of The May 50K. And so tell us about what The May 50K is and how people can join.
Sophie Drummond:
Well, I just want to say thank you so much for having me. I’m so excited to be here today. The May 50K is such an exciting campaign because it’s fully virtual, so it means that anyone all around Australia can join in the effort and take on the challenge. So it’s a 50 kilometer movement challenge throughout May. So it’s really versatile. People can walk, run, roll, cycle, swim, anything they want really. We do get some very creative participants and people can also adjust their kilometers. So-
Rohan Greenland:
I had someone suggesting that she might make 50 cheeses. Does that count?
Sophie Drummond:
Look, it’s not something that I’ve seen before personally, but you know what, why not?
Rohan Greenland:
Sorry, I interrupted you.
Sophie Drummond:
No, that’s okay. Yeah, so participants can pick how many kilometers they want to do. So it can be 50, 100, 150, but people can go all the way up to 250 kilometers of anything they like. So we’ve seen people do 250 kilometers of walking throughout May, which is really an incredible effort, especially for some people living with MS, I think are doing that many kilometers throughout May, which is amazing.
Rohan Greenland:
And how do people actually sign up to participate?
Sophie Drummond:
So, it’s super easy to sign up to The May 50K. You can just go to the website, themay50k.org, and you can sign up for free and create a team and whatever else you want. It’s very easy.
Rohan Greenland:
As simple as that.
Sophie Drummond:
Yeah, it’s really easy.
Rohan Greenland:
And I might say that since The May 50K commenced back, I think in 2019, it’s raised a total of $22 million for MS research, a really fantastic amount. And Tennille, the funding that comes from The May 50K, how do we use it to drive world-class research in Australia?
Tennille Luker:
Yeah, absolutely. So there are two ways in which MS Australia invests in research. The first is through our investigator-led funding scheme. So these are research funding opportunities designed to support innovative projects led by independent researchers in the field of MS. And we offer several core grants that are provided annually. So that includes funding for researchers, research students, research projects, as well as travel for collaboration. So we have some researchers who like to travel overseas to learn new techniques and then can bring that back to Australia and disseminate that information to the rest of the MS research community.
We also offer a bunch of grants every few years as well. That includes our Senior Research Fellowship. So this is offered to researchers who are leaders in the field of MS and they last up to five years. We also provide Paired Fellowships, which is $750,000 to a neurologist and a researcher to work together in order to move something from the lab, some sort of intervention from the lab to the clinic at a faster rate.
We also have targeted core Project Grants, and these focus on a specific area of MS. For example, our most recent round focused on myelin repair. So that’s one way in which we use the research funding from The May 50K.
The other way in which we invest in research is through our national collaborative research platforms. So these are groups of experts who work together to answer a question on a specific topic in MS. And the beauty of these platforms is that they prevent duplication, they collaborate together, and as a result they can accelerate the progress of the research. And currently Australia coordinates and funds nine national collaborative research platforms. I won’t go into too much detail about each of them in the interest of time, but they focus on genetics of MS, onset and progression, focus on the role of vitamin D in MS. We have what’s known as an AHSCT registry. So for those who undergo autologous hematopoietic stem cell transplant, we can keep track of them and basically determine which group of people benefits most from this treatment.
We also have the Australian MS Longitudinal Study, which is patient-reported outcomes, which has been vital for our advocacy efforts. And I think the most exciting one at the moment is PLATYPUS, which we launched at our Progress in MS Research Conference last year, which is focusing on repurposed treatments in the treatment of progressive MS. So there’s more than that, but in the interest of time, I won’t going into too much detail.
Rohan Greenland:
Well, PLATYPUS is very exciting and it’s actually world-leading, isn’t it?
Tennille Luker:
Absolutely.
Rohan Greenland:
Tell us a little bit about why it’s cutting edge and world-leading.
Tennille Luker:
Absolutely. So it’s what’s known as a multi-arm, multi-stage trial. It’s an adaptive clinical trial. So with a traditional clinical trial, normally what happens is you have a potential treatment and also a mock treatment or a placebo. And the clinical trial might last for say two years. And even if the treatment, a potential treatment doesn’t look really good, the participants continue with the clinical trial right up to the end, so it might be two years. The beauty of PLATYPUS or adaptive clinical trials is that we can test multiple treatments at the same time against the same control or mock treatment arm.
And another thing with adaptive clinical trials is that there are interim analyses that take place throughout the course of the clinical trial. So for example, there might be an interim analysis three or six months down the track, there might be a particular treatment that doesn’t look good, and that treatment arm can be dropped and a new treatment arm can be picked up. And the participants that were in the old treatment arm can we be moved to the new treatment arm so no one loses out. The beauty of PLATYPUS is that those people who are on treatments can continue with their standard of care treatments. They don’t need to give up anything. So no one’s losing out at all. And because of all of this, because… And I mentioned it’s repurposed drugs, so these are treatments that have been approved for use for a different indication, so a different condition that have shown promise in myelin repair or protecting the nerves.
So because they’ve already gone through that safety phase of the clinical trial, we can completely bypass that step. And all of these points combined means that PLATYPUS will hopefully move a treatment for progressive MS much quicker to clinical practice. And we all know that treatments for progressive MS are a huge unmet need, and we’re really trying to bridge the gap with that. So without The May 50K and without MSWA, we wouldn’t have been able to fund this clinical trial. So we’re very excited and we’re hoping to launch it by the end of the year.
Rohan Greenland:
So the funds that are raised by participants and supporters of participants in The May 50K goes to some really world-class leading-edge research, but there’s more than just PLATYPUS and all the other research programs that we do. There’s also a new Epstein-Barr virus platform. Tell us a bit about Epstein-Barr virus and why this is potentially a real game changer for the MS community as well.
Tennille Luker:
Absolutely. So we know that Epstein-Barr virus is a risk factor for the development of MS. And in fact, it’s probably the biggest risk factor in the development of MS. There was quite a pivotal study that was published, I think it was beginning of last year, and we’re quite excited because we have been able to partner up on five projects along with various researchers to look at the role of Epstein-Barr virus in a variety of things, including MS onset, MS progression, as well as fatigue. So in addition to national researchers, we’re partnering with international researchers. A lot’s going on in that space. And yeah, we’re going to have a new EBV platform. So I’m pretty excited about that.
Rohan Greenland:
And that really links us in very firmly with the global work around Epstein-Barr virus. Very exciting stuff. Thank you so much. And back to Sophie. Sophie, you are a May 50K participant, and you work on the event, and you live with MS. Can you share with us a little bit about your MS journey and in particular, the experience of taking part in The May 50K while living with MS?
Sophie Drummond:
Sure, yeah. I mean, when you work on a campaign and are doing the campaign and also benefiting from the fundraising of the campaign, you do feel very ingrained with it and it almost feels like your whole life becomes the campaign throughout May. So The May 50K is basically what all of May is about for me. And I love taking part, it’s a fun challenge every year. I think, as I mentioned earlier, it can be so tailored to your personal goals and what you are trying to achieve. So I’m training for 10k right now. So I’m going to be trying to run. I think I’m going to try and do a hundred kilometers throughout May, and I’m going to mix the 100ks of running and walking because I don’t think I’m quite ready for a hundred kilometers in one month. But yeah, I guess from an MS standpoint, I always find that exercising has been really helpful and it’s been a great benefit to me and my health and also to my fatigue, being able to move and get outside has been amazing.
And I also love The May 50K because of the community aspect of it. I love seeing all the different people throughout Australia take part in The May 50K together. A lot of my friends and family are taking part, so I’m sure we’ll definitely get out on a couple of walks together throughout May. But yeah, it’s definitely the kind of thing I would encourage everyone who can to take part in, because it really does make this great sense of community when you are all kind of posting about it on socials and seeing what other people are doing. It’s really exciting.
Rohan Greenland:
And that’s the great beauty of The May 50K. You can walk, you can run, you can roll, and you can do a combination of things. You can do a bit of running, a bit of walking. It’s so flexible and tailored to your individual abilities and needs. So it’s very easy to participate. I’m going to try and run 150 kilometers. I’m running with… I’ve got terrible arthritis, so as long as my poor old knees hold up, I’ll be determined to try and get the 150 kilometers done but some of that might be walking. But I’m also running for my cousin Claire who has primary progressive MS and my niece’s partner Joe, and Joe has relapsing remitting MS. And every step I take, I’m taking it for them and I have them in my thoughts every time I go out there to raise funds. And I have them in my thoughts when I ring and contact my friends, my colleagues, acquaintances, and ask them to support me because by supporting me, they’re really supporting them. And the work that we can do through our research is just changing lives every day.
Sophie, I know there’s a lot of teams taking place. Tell me how a team is formed, and I have had a look at some names of teams and there’s quite witty names out there. Are you able to enlighten us on A, how you form a team, and B, some of the interesting names that we’ve seen crop up to date?
Sophie Drummond:
Yes, there are some awesome team names and we love seeing people take part in teams because they really encourage each other. And then you can also start to see teams getting competitive in the team leaderboard to see who’s going to raise the most, who’s going to move the most. It’s really exciting. So yeah, you can create a team when you create your profile. And this year we also have a really exciting kind of team set up for workplaces. So, workplaces can make a workplace team, but they can also create sub teams within their workplaces. So that can mean that you can have the finance team versus the HR team versus the marketing team, and you can really try and challenge each other to see who’s going to win. You can set it up in whatever way you want, but I love seeing people in teams. Yeah, we have the MS Movers or something like that. We have so many fun team names. People get very creative.
Rohan Greenland:
And last year we raised a fantastic amount. We raised $3.4 million for MS research. Have we got a target for this year? And do you think we can beat that?
Sophie Drummond:
Yeah, our target is $4 million, so let’s see if we can beat it. It really relies on everyone getting involved and doing the best they can to ask for support from friends and family. And I guess as well, really sharing the impact that this event has. It’s more than just the month of movement. It has such a profound impact on the community, and I think that hearing Tennille speak really does highlight that. And it’s so important that we keep that front of mind throughout May and when we’re asking for donations.
Rohan Greenland:
No, that’s fabulous. And we hope to see lots more teams sign up and lots more participants. I think we’re tracking well with participants, but we’d love to see a lot more people sign on the dotted line and give it a go. And one of the reasons I think it’s so important is because prevalence of MS is rising quite sharply. And in 2017 there were 25,600 people living with MS in Australia, and we released data last year which showed that this has risen by 30%, 30%, and now 33,300 people are living with MS in Australia. Tennille, that sharp rise in prevalence, can you tell us a bit about that? And it is not entirely surprising we’ve seen similar trends elsewhere in the world, haven’t we?
Tennille Luker:
Yeah, absolutely. So, I think we’ve got close to 3 million people worldwide living with MS right now. And yeah, it’s not unexpected because we are seeing that everywhere. The rise in prevalence isn’t only due to better diagnostics. Everything’s been relatively the same for the last five years or so, or six years. I think the big thing is sun exposure. We’re quite vigilant with putting on sunscreen, staying out of the sun, so we’re not getting as much vitamin D, and we know vitamin D is very important for the immune system. We’re also having later pregnancies, like later in life pregnancies and pregnancies are protective against MS. And there is smoking as well because smoking can promote MS although we’ve seen a bit of reduction in smoking. So, there’s several different risk factors or behavioural factors that have probably led to the sharp increase. So it’ll be interesting to see when we release the next report, how many people are living with MS in Australia.
Rohan Greenland:
And in fact, I think the sharp rise in prevalence really means we need to get the research moving. We need to supercharge our research effort if we’re to get on top of MS. But in general terms, our mission is for a cure and a potential way to a cure of course is actually almost getting in and stopping MS before it starts. And we’ve been talking to some other MS societies around the world about a possible prevention initiative. Can you tell us a little bit about that as a potential new area of research?
Tennille Luker:
Absolutely. So I completely agree. I think an ultimate cure for MS is looking at prevention and early detection and early intervention, getting in before it starts. And so we’ve been working with across the different MS organisations across the globe to come up with, I guess a strategy on how to combat this or how to detect MS a lot earlier. So, it’s not just globally as well looking at prevention. One of the projects that we’re funding at the moment is looking at AI tools to detect slow burning lesions and detecting them at a much earlier stage so we can provide early intervention before things get worse. So I think the important thing is actually getting it as early as we can to prevent full-blown MS.
Rohan Greenland:
Tennille, we would love to hear a bit more from your perspective as a researcher, as a research expert on the impact and benefits of exercise for people living with MS and other chronic conditions.
Tennille Luker:
Absolutely. So we know exercise is good for everyone. We hear about the cardiovascular benefits of physical benefits, but it can also help with a lot of MS symptoms, which Sophie alluded to earlier. So that includes fatigue like you mentioned, Sophie, sleep, pain in particular, mobility, all of that. So, it’s actually belief that it’s exercise considered to be one of the most effective things to do in addition to taking MS medication. And in addition to that, exercise is associated with a reduced relapse rate, it’s associated with slowing progression of disability. There’s also mental benefits or cognitive benefits including improvements in thinking, processing memory. There’s improvements in the psychological benefits. So improving mood. We all experience that if we’re having a rough day. I find when I’m really stressed from work, for example, I don’t feel like going for a run or anything or going to the gym or anything like that, but when I go, I feel so much better.
So, there’s so many benefits with exercise, and we actually released a guide a couple of years ago on adapting your lifestyle and the different modifiable lifestyle factors, so different behaviours and parts of our lives that we can change in order to improve symptoms of MS. And there’s a lot of information of physical activity and exercise and that can be downloaded from our website. So there’s so many benefits to doing exercise for chronic conditions.
Rohan Greenland:
And Sophie of course, it’s probably advisable for people who haven’t done regular exercise to get advice from a health professional before participating.
Sophie Drummond:
Yeah, definitely. I mean, we never want anyone to push themselves too hard. If 50 kilometers is not manageable or achievable for you, then that’s totally fine. We never want anyone to put themselves at risk, but you can adjust your kilometer goals. So if your goal becomes, you just want to do some form of movement every day, that is also hugely beneficial. Or if it’s every second day or whatever it is, we want this to be something that everyone can take part in and enjoy and also experience those benefits from.
Rohan Greenland:
And if you are overambitious a bit like me, putting 150 kilometer goal and suddenly my arthritis flares up in the middle of it, I can very easily adjust my total and still accomplish my revised goal without any difficulty.
Sophie Drummond:
Yes, absolutely.
Rohan Greenland:
And tell us about the app. The app’s been redeveloped this year. I’m finding it lots of fun.
Sophie Drummond:
Yeah, we love the app. The app is the go-to place to log your kilometers throughout the month of May. So we really want it to be just like quickly, you can turn it on and you can go for a walk or go for a run and you can record your kilometers. You can also input them manually. It will show you how close you are to your kilometer goal, how close you are to your fundraising goal, and it also has a link directly through to your dashboard, which is where you can do the more nitty-gritty things like add people to your team and thank your sponsors and all of those.
Rohan Greenland:
I’m really enjoying the blog associated with it and I’m regularly updating my blog, but also there’s some lovely rewards, milestones along the way as well. Tell us about those.
Sophie Drummond:
So of course we have to reward our participants who do amazing things in the fundraising space. So, we have a bandana for $250 and an exclusive t-shirt for $500 fundraisers. And we also are holding some really exciting competitions throughout the month, and some of them have already started. So yeah, there’s a whole bunch of different ones, but even just by registering and starting your fundraising, you can go in the draw to enter (for) these insulated tumbler things. They’re very cool. We’ve got some headphones they say May 50K on them there if you log your first kilometers by May 8th. So there’s a whole range of different reasons to be super active and you can check out all of those on the website.
Rohan Greenland:
I’ve got to say I have earned my t-shirt already, and I’m very pleased and I’ve been wearing it. I was out on Monday in kind of cold Canberra morning, walking with a couple of colleagues along Lake Burley Griffin and the number of people who said, “Ah, what’s The May 50K all about? Is it MS?”, and it was actually a good conversation starter for other people strolling along by the lake.
Sophie Drummond:
Yeah, definitely. So last year we sent out t-shirts after fundraising closed, but this year we’re making sure to get them out really, really early so that you can wear them while you’re doing your challenge and use them as a talking point and an opportunity to ask for donations or get other people to sign up because yeah, we want people to be showing what they’re doing throughout May.
Rohan Greenland:
And it’s a point we often make actually, the number of people who come up to me to say, “Oh, MS that’s such a good cause.” I’ve been blown away by that. And even though there may just be 33,000 people living at MS, there’s many millions of people directly impacted by that, families, friends, colleagues, carers. So the MS community is actually much, much bigger than people sometimes think. And I find one of the great things about MS is the community’s engaged, it’s vibrant, it wants to know more and wants to be active. And I think The May 50K builds into that and gives people an opportunity to really do something very positive and to make a statement.
Sophie Drummond:
Yeah, definitely. I would say the community aspect of The May 50K is my favorite part. We have a community group on Facebook that is just, it’s a highlight of my day every morning, logging in and seeing who’s posting. We get photos, we get stories, we have people that will reply to every single post that other people are making and encouraging them. It’s a great place to be, so I highly recommend joining that if you haven’t already.
Rohan Greenland:
And of course it’s gone global. I know that the UK participate, Germany have started a May 50K and very enthusiastically Canada. And we had the CEO of MS Canada, Pam Valentine here recently to talk about particularly our prevention work. But she has talked about how enthusiastic they are in Canada, and they’ve only just started The May 50K. They did it for the first time, I think last year, and getting great numbers of people participating with enormous enthusiasm too. So I think it just shows what a wonderful idea The May 50K is. With participants, I think we’re very close to May now. And have we got any celebrities participating this year?
Sophie Drummond:
No celebrities so far, but we do have an incredible group of, we’re calling them ‘The May 50K Motivators’, and they are all individuals living with MS who are taking part this year. And the people who are cheering on everyone to participate throughout May, and I would say some of them are celebrities within The May 50K community. So that’s kind of a celebrity.
Rohan Greenland:
Absolutely. I would put that in celebrity status. Absolutely. And in fact, I remember talking to a terrific person last year who was participating in The May 50K in Darwin, and she arranged several treadmills to be installed in an air-conditioned shopping center because it was so warm that people participated and did, I think a 24-hour runathon involving a local DJ and radio station. It was a great success. Tennille, back to you, your personal May 50K, what’s your goal and how many kilometers are you going to do? You’re actually a real runner, unlike me who plods?
Tennille Luker:
No. You guys are putting me to shame. I’m only doing 50 kilometers this year, but I go to the gym regularly and I’m going to go to the gym more often. So I normally go two or three times a week to do either strength training or HIIT or something like that. High intensity interval training. I’m going to try and go four or five times a week. I’m going to walk my son to and from school, try and get him involved because I want to lead by example with my kids. I also get them to come to the gym with me, which is awesome. But one of the goals, fundraising goal is raising over a thousand dollars. That will be amazing. So they’re my goals for this May.
Rohan Greenland:
And how about you, Sophie?
Sophie Drummond:
My goal is to run and walk a hundred kilometers throughout May, so we’ll see how we go. Yeah, hopefully I can do it, but it should be an amazing month.
Rohan Greenland:
Well, I wanted to include a half marathon in my May 50K, and I’ve actually done it early. There was the Canberra half marathon, so I ran in The May 50K shirt in the Canberra marathon. I did the half marathon a couple of weeks ago, and I’m still recovering from that, but it was a great event, and it was good to fly the MS May 50K flag along with about four and a half thousand other runners. It was a wonderful event and got lots of questions. And it was a great place to get some kilometers down, although of course they won’t count because The May 50K clock starts on May the first, doesn’t it?
Sophie Drummond:
Yeah, exactly. All of our kilometers reset on May 1st, so should have scheduled that half-marathon just a few weeks later.
Rohan Greenland:
I’ll have to write to the organisers and tell them to move it next year.
Sophie Drummond:
I think that’s a good idea.
Rohan Greenland:
Well, excellent. Listen, thank you so much for joining us. Tennille, thank you for telling us about the research program and the cutting edge work it’s doing. It’s really great to hear. And Sophie, you’re a legend. Thank you so much for all you are doing for the MS community and as someone living with MS, you’re superstar to all of us. So thank you and I love getting all your messages.
Sophie Drummond:
I hope you enjoy seeing my face in your inbox every day throughout May.
Rohan Greenland:
Certainly will.
Tennille Luker:
Thank you, both.
Rohan Greenland:
Thank you, both.
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.
