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. Welcome to The Raw Nerve. I’m your host, Jeremy Henderson. 

Today, we’re talking about the annual MS Australia Awards, which have just opened for nominations for 2025. Now, I can’t think of better and more qualified people to discuss the awards program than today’s four guests. 

Joining us today firstly from Hobart in Tasmania, we have Sharlene Brown. 

Sharlene is an MS Australia board member and chair of the MS Australia Awards Committee and chair of the Advocacy Committee. 

Welcome, Sharlene. 

Sharlene Brown: 

Hi. Thanks, Jeremy. Thank you for having me. 

Jeremy Henderson: 

Also, joining us from Newcastle in New South Wales, we have Professor Jeannette Lechner-Scott. 

Jeannette is the senior staff specialist and conjoint Professor at John Hunter Medical Research Institute. Jeannette is also an MS Australia board director and the MS Australia 2024 MS Research Award recipient. 

Welcome, Jeannette. 

Professor Jeannette Lechner-Scott: 

Thank you for having me. 

Jeremy Henderson: 

From Bunbury in Western Australia, we have Lynda Whitton, the MS Australia 2024 John Studdy Award recipient. 

Welcome, Lynda. 

Lynda Whitton: 

Hi, Jeremy. Thank you for having me. 

Jeremy Henderson: 

And in our fourth chair today, we have MS Australia’s 2024 MS Advocacy Award recipient Marianne Gaul from Tamworth in New South Wales. 

Welcome, Marianne. 

Marianne Gaul: 

Thank you very much, Jeremy. 

Jeremy Henderson: 

Now, our four guests today all have a very personal connection to MS and deep ties to the MS community. So, I’m looking forward to talking to you all about what drives you and what makes you so passionate to give back as we chat today about the MS Australia Awards program. 

Now, the program was expanded in 2024 and we’re going to talk about why we expanded the program, the result of that change, and we’re going to talk about the importance of recognising the individuals making extraordinary contributions out in the Australian community. 

Now, Sharlene, before we do a deep dive into the awards, I wonder whether you’d be happy to tell me a little bit about your personal connection with MS and to the MS community. 

Sharlene Brown: 

Sure. Thanks, Jeremy. 

I have been a member of MS boards for approximately 16, 17 years now, and it all came about simply because I myself was diagnosed about 24 years ago, with symptoms much earlier than that, and for me, sitting back and doing nothing was not going to occur for me. I’m a real doer, so my connection is obviously I have a self-interest in it and I also have a family member with quite severe MS. So for me, I think about the differences in our abilities at this stage and what we can continue to do going forward. So for me, very personal connection, like many on the call and something that I’ve really enjoyed doing the last 20 odd years. 

Jeremy Henderson: 

Thanks, Sharlene. 

So, obviously, you’re really motivated. It’s really important for you to see MS Australia have a strong awards program that provides an opportunity to shine a light on people out there in the community doing wonderful things? 

Sharlene Brown: 

Absolutely. 

And I think that being able to expand the criterion for this particular award has been really well received, because we have so many different people who work in different areas and different facets of MS, that it was really nice opportunity for us to be able to recognise them. 

So, we have obviously Jeannette Lechner-Scott, who’s online at the moment, who was our research winner last year, congratulations, Jeannette, actually devoting her working life to MS research. And then we have the Advocacy as well with the awards and I think being able to promote that and to have people working with different areas of the MS world is something that we really do need to recognise. And the John Studdy Award obviously was the inaugural one that we’ve been able to pass on obviously this year to Lynda, and so congratulation, Lynda, on that. 

But being able to encourage the volunteer work that’s being undertaken and to motivate and retain our volunteers is a really important part of what we do. 

Jeremy Henderson: 

Sharlene, that expansion of the awards to actually create these two categories that you spoke of, the Research Award and the Advocacy Award, and to make those open to public nominations, how important was that to really open this up to the community and to make sure that we were really identifying those people out there doing so much of the heavy lifting? 

Sharlene Brown: 

It’s so incredibly important because without these people we don’t have the advocacy we need, and recognising and showing them publicly how much we appreciate the work they’re doing is something that is incredibly significant to them personally for all the work that they put in, but also for MS Australia to be able to say, “Look, we see you and we really appreciate every single thing you’re doing.” 

And it also helps … I guess, acknowledging these people publicly and their contributions is a significant step towards obviously also creating a culture of service, which is what we should all be aspiring to do. It doesn’t matter if people have an intrinsic connection to obviously the goal of what we’re trying to do here but being able to provide time and volunteer to further the cause, such a genuine and loving thing to do, that it’s really important that we take the time out to actually recognise them. 

We’re absolutely pumped that we have so many people nominating for these awards and that we have these three lovely women here today, who’ve actually been the winners of them. 

Jeremy Henderson: 

Jeannette, if I can turn to you and can I ask you, can you talk to me about your connection to MS and your passion for giving back to the MS community? 

Professor Jeannette Lechner-Scott: 

As Sharlene already has said, I’ve devoted my whole working career to multiple sclerosis. 

As a young person, I started being involved in an MS center in Switzerland and you can see my younger self on video training, of which is still used, to assess patients for any clinical trial that is run at the moment. 

At this stage, there weren’t any therapies for MS, and seeing that with research I could make such a huge difference and such an impact to people with MS, has probably driven me forward to, when I moved to Australia to build up my own MS center here and not only growing from zero to 1600 patients, but also to have a large research group that is very productive. 

Jeremy Henderson: 

Now, Jeannette, this second question I’ve asked you before, and I remember at the time you gave me a very selfless and a very generous answer to this question and the answer wasn’t about you at all, it was about raising greater awareness to MS. I asked you how special it was for you to be nominated and to have received your award. 

Professor Jeannette Lechner-Scott: 

I was very humbled and honoured to get this award and I didn’t expect it at all. I didn’t know that I was nominated. Especially with your fantastic communication skills, you put that out there and lots of my patients come and congratulate me on the award and feel proud that they’re seeing a doctor that has got a national award and that they are in the center where the forefront of research is. So it’s very reassuring for my patients and hopefully, will raise awareness and that research needs to keep going and in the shrinking environment of research funds that this will be enhanced. 

Jeremy Henderson: 

That last point, I think, that’s very much what you emphasised when we last spoke. It was less about that personal accolade for you and more about… you saw this more as a really wonderful opportunity to get that message out, the importance of MS research and continuing to invest in that incredible work. 

Jeannette, what would you say to people out there thinking about nominating somebody they know for the 2025 MS Australia Awards? 

Professor Jeannette Lechner-Scott: 

It’s a very special thing to do, and most of us are so involved in MS research or work for people with MS that they don’t expect something like that and be awarded and recognised for all the hard work that we all do way outside what is expected in an eight-hour working day. 

I think you should nominate that person that you know and recognise them and applaud them for what they have done. 

Jeremy Henderson: 

Thank you, Jeannette. 

Lynda, now congratulations. You’re the 2024 John Studdy Award recipient, the John Studdy Award, of course the highest honour that MS Australia can bestow on a member of the community. Congratulations. I wonder, Lynda, if you can talk to me about your connection to MS and your passion for giving back. 

Lynda Whitton: 

Okay. 

So I was diagnosed with MS in 1996 and I joined the MSWA society and the Bunbury Outreach. And from there, of all the clients in there, I was probably one of the very few that was still ambient. A lot of them were in wheelchairs and I just stood there and I thought, “This is not where I want to be. This is not how my life’s going to be.” 

So, I was very lucky in the fact that my MS was a slow progression. So that meant that I could achieve most of everything I wanted to do in life to a reasonable standard. But it also made me realise that I could help the people in that outreach group that couldn’t help their self, and that I was lucky in this lottery of MS of how my life was going. 

To answer the question of why I am passionate about it is that I’m thankful. Thankful for how my MS has gone over the years and it’s allowed me to be able to help others. Simple as that really. 

Jeremy Henderson: 

Did it come as a surprise to receive the award? What was your reaction when you heard the news? 

Lynda Whitton: 

To receive the reward… Look, what can I say about that? Just to be in the same category as previous winners of this was way out of my league, I thought. I know Nigel Caswell from the MS advocacy won it a few years ago, so to be nominated was a huge honour. Huge honour just to be nominated, but to actually win it and to hear my peers say to me that it was deserved and to hear my children say that they were proud of me. I’d never thought myself of doing anything like that. So, it’s been very humbling. I’ve been very honoured and very proud to receive this award. Very proud. 

Jeremy Henderson: 

Very well deserved, Lynda. 

Lynda, what would you say to people out there thinking of nominating someone that they know who’s doing incredible work in the MS community? What would you say to those people doing that thinking? 

Lynda Whitton: 

Well, if you know of anybody who’s put the years in and the effort in, somebody doesn’t do this expecting to get any accolades or any rewards or anything of it, they do it because they believe in what they’re doing and the believe that they’re helping with people and it’s part of their DNA and that’s just the way they are. But if anybody out there knows anybody to be acknowledged like this, it is tremendous. It gives you that real warm, fuzzy feeling for somebody else to say, “I’ve seen you doing that and I thank you for it.” So if you know anybody that could be nominated, I would say do it because you’ll make their day. It made my day. 

Jeremy Henderson: 

Sharlene, I think it’s true to say that all of our previous winners have all been incredibly humble, and I think it speaks to our thinking around creating… expanding the awards and asking people to nominate others and not allowing self-nominations and I think it’s important. There are so many people out there doing it and they’re not doing it for an award. They’re not doing it for the recognition, they’re just going about their business, which is why I think having people nominate those heroes is so important. 

Sharlene Brown: 

It is. 

And just listening to what Lynda said then, obviously, very humble in her approach to it and was shocked by the award but, Lynda, you shouldn’t be. You’ve just done so much work over what? 20 plus years and I don’t think you realise the ripple effect of you being a bit of an ambassador for the MS. That goes on for … It can go on for generations too. So, being able to draw attention to the cause, to be able to encourage other people to also volunteer and allowing us to validate these skills and your effort in what you’ve done in the last 20 odd years is just tremendous. 

So, the expansion of the awards was so we can actually capture people like yourself. We have amazing researchers, Jeannette, who’s siting to the right of my screen, looking at you, that’s fabulous. They’re doing fabulous work as well. Absolutely. But it’s also the quiet achievers like yourself, Lynda, that just gives us a bit of a buzz as well. So, the warm fuzzy feeling, I like that. It’s so well deserved, so please don’t ever undersell your volunteer efforts. It’s so very much appreciated. 

Lynda Whitton: 

Thank you for that. I appreciate those words. 

Jeremy Henderson: 

Marianne, I wonder if I can ask you about your connection to MS and your passion for giving back to the MS community. When did that start? Why did that start? 

Marianne Gaul: 

It probably started at the beginning of COVID, when I was asked or invited to support an over 65 tele-group. These people have now almost become like a family to me and from that, I was keen to support other people over the age of 65 with MS and I also support one-on-one phone support, just because the people around and people in MS Plus are just such an incredible community to work with. 

Jeremy Henderson: 

How special was it for you to be nominated and to receive the award? I recall that you didn’t necessarily want to be in the spotlight or want to face all of that fortune as deserved as it was. 

Marianne Gaul: 

You’re right, Jeremy. 

When Lisa first contacted me to be on television and to speak to radios locally, I was a little bit overwhelmed and sort of… I didn’t feel comfortable about it, but then I realised how important it was to raise the awareness within this community and wherever the media reached out to…to let people know about MS and that you can live very well, especially when you have the right supports in place. 

Jeremy Henderson: 

Marianne, you live in Tamworth and as it turned out, the local news services in Tamworth were very, very keen to tell a story about a local champion, someone in their community giving back and doing so many amazing things. 

Marianne Gaul: 

Yes, Jeremy, right. 

I think they were quite interested in the fact that I’m involved in fundraising for (The) May 50K. I had been in a spotlight for a number of other reasons with my nursing career and through my volunteering with Lions. So, it came natural just to transition to something that I’m really, really proud of and really keen to support. 

Jeremy Henderson: 

I think earlier Jeannette mentioned that as humble as she was to receive her Research Award, that she also realised it was a wonderful opportunity to just build greater awareness about the condition of MS, the need to continue to invest in MS research, the absolute need to make sure that we’re adequately supporting people living with MS, and you clearly, you saw your award as a similar opportunity to get that word out. 

Marianne Gaul: 

I think it’s interesting, Jeremy. 

I could talk about small villages and large villages and so in Tamworth, there are a lot of supports within that village in terms of medical, allied health, and social support, but the further you get out in terms of regional versus rural and remote, those villages are very small or non-existent. That’s the part that I’m so passionate about, is trying to support people who live within an isolated community to get them to not only think about the wellbeing, the health and wellbeing of MS, but also the social connections. 

Jeremy Henderson: 

Another question for you, Marianne. I think I heard and tell me if this is correct, but I think I heard that after you did all of the TV news and radio news pieces, that you developed a bit of celebrity in Tamworth. 

Marianne Gaul: 

Yes. I’ve had a lot of people now who are very keen to support MS through the annual fundraiser (The May 50K). I think I probably gave some people some good laughs just using hiking poles and walking kilometers every day through May… cleaning up the rubbish on the road as I went around. But there’s a lot of people who got a lot of fun out of seeing me do those kilometers. 

Jeremy Henderson: 

Excellent. 

I wonder, Marianne, what would you say to people out there that are thinking about nominating somebody that they know who is just doing some amazing work in the MS space and in the MS community? What would you say to those people who are considering nominating somebody for the 2025 MS Australia Awards? 

Marianne Gaul: 

It’s interesting you should ask, Jeremy, because I actually rang someone this morning who is part of the MS family and suggested somebody that we might nominate for the advocacy role. And I think it’s so important not only in terms of the awareness of people living with MS, but acknowledging the outstanding work that’s done by so many people who are just very quiet achievers and very humble in their work but deserve the recognition for future generations as well. 

Jeremy Henderson: 

Thank you, Marianne. 

Sharlene, let’s continue to talk about the award program, particularly about the two awards that are open to the public, that are open nomination. 

Nominations for the MS Advocacy Award and the MS Research Award are open to the public until Sunday, the 7th of September. As we’ve just noted, self-nominations are not permitted, so we’re looking for people to nominate their local heroes and draw attention to those people’s wonderful contribution. The process couldn’t be simpler. It’s a simple online form and we’ll include the details in the podcast show notes, and then once we have those nominations, they will go to the selection committee for consideration. 

Now, Sharlene, you chair the Selection Committee. I wonder if you could explain to me what that process is like and also, could you speak to the quality of the individuals that are nominated and actually, how tough that process is when we have so many worthy potential recipients? 

Sharlene Brown: 

Absolutely. 

Well, obviously, when the nominations come in, they’re compiled and they’re sent out to members of the panel to have a read through of them first, obviously, because coming to a meeting and having read the nominations and gone through all the supporting information is crucial to us being able to work out the best person to give these awards to. 

We also have obviously a more sciencey person on the panel and then we have members from the MS community themselves and also, I think, on the last occasion, we had an MS nurse which was splendid because MS nurses are honestly so incredibly important to people living with MS generally, so we wanted to get their thoughts as well, as to how the applications were shown and who would be worthy to actually receive these. 

The quality of the nominations is outstanding. Some people have been, I believe, desperately waiting for an opportunity to recognise people who have given so much back to the community. So when the awards come in, we’ll go through each of them. Every single one of them is looked at and we weigh them up against each other and we just have to say, “Look…” a bit like what Lynda said, “this one here holding the… This is my warm and fuzzy one. This is the person who desperately needs to be recognised.” 

And it has to be longstanding meritorious service obviously for (the) John Studdy Award, which is incredibly important and what Lynda was lucky enough to receive last year. 

And then the Advocacy Award as well, these are the quiet achievers who are working behind the scenes to do such fantastic work for the community. These are the people who are doing the raffles, who are organising, the fundraising behind the scene and also working in a peer capacity to help other people in the community who may need someone to talk to. 

So, the process is really fun to go through. We see so many wonderful people. We enjoy getting together once a year to go through this. And I must say sometimes, the nominations coming in are so incredibly close that being able to expand the awards, like we did on the last year’s occasion, was enabling us to be able to better recognise all the work that’s being done nationwide. So, it’s just a fabulous opportunity for someone to be involved and to nominate other people in the community. 

Jeremy Henderson: 

Before we draw the podcast to close, I’d like to get the last word from all of our guests. I’m really keen to know from each of you, where to from here in your MS work? What’s ahead? What have you got ahead of you? Maybe if I could start with you, Lynda. 

Lynda Whitton: 

Well, I’m getting old, so my MS work and any work really is coming to a very slow progression from here on in. But as far as the Bunbury Outreach Group for the MS, I’ll still help out there. But really for me, from now on, it’s looking after myself. I’m riddled with arthritis so I need to take care of myself, and I have eight beautiful grandchildren that will be the light of my life from now on. 

So as far as MS goes, I’m afraid I am backing off a little bit from now on but it’s for me. I need to spend some time making this body work a bit better than it does at the minute. 

Jeremy Henderson: 

It sounds well-deserved, and it sounds like you’ll have a very busy agenda, so all the best. 

Lynda Whitton: 

I will. 

Jeremy Henderson: 

Jeannette, if I can ask you, what do you have going on in your MS work life at the moment? What’s ahead for you? 

Professor Jeannette Lechner-Scott: 

Well, there’s still a lot ahead of me. 

I have luckily very good colleagues and young colleagues that will carry on the work that I have initiated. We will continue doing MRI studies which look what are the specific changes that lead to cognitive impairment, which is a major issue for people with MS. We will look also… 

What we’re working on at the moment is in IVF for people with MS. There is… As we know in the general population, fertility is and fecundity is declining, our population is shrinking and that seems to be slightly more the case for people with MS. So if the women are too scared to have children or if the MS is really affecting or the treatment is affecting fertility, this is still out and needs to be researched. There’s a lot of research that needs to be still done. 

And while the prognosis of people with MS is now much better than it has been 20 or 30 years ago, there’s still significant symptoms and it affects your daily life quite significantly. And there’s lots to do. The day hasn’t got enough hours. 

Jeremy Henderson: 

An enormous challenge and an incredibly important one. 

Now, Marianne, I wonder if I could ask you, what do you have planned for the rest of 2025 in terms of your MS work? What’s ahead in 2025 and 2026? What have you got? 

Marianne Gaul: 

Oh, I’ve already started, Jeremy. 

As I said, my passion is trying to do fundraising through May 50K so that we can support more research. So, I’ve already been around the neighbourhood and asked people would they like to donate their empty cans and bottles, and I’ve already raised, in the last week, $106. So, that will continue in terms of putting it towards May 50K. And again, of course, trying to get people within this community to come to our support meeting, which we hold on a monthly basis. 

Jeremy Henderson: 

Thank you, Marianne. 

Sharlene, what’s ahead in 2025 and 2026? 

Sharlene Brown: 

Well, for me… First off, Jeannette, please keep researching. I am one of the recipients, obviously, of all this work that you and your colleagues are putting into play, because I was told 24 years ago, 10 years would be the max that I’d be able to continue working and here we are 24 years later and I’m still doing it. I’m still going strong. So thank you for everything you’ve done. You are keeping me in the workforce and keeping me happy and healthy. 

Personally, I’m still focusing on as the chair of the Advocacy Committee for MS Australia. So the nationwide committee we’ve got is looking at equity of access to NDIS across the nation. It’s just so incredibly important. I hear stories all the time about people who are either aged out of the system or who are not able to access services that they so very desperately need. This has to be a priority for us. 

I will always continue to be a peer support person. So these relationships that I’ve managed to build up over 20 odd years and also, to represent the rural and regional areas that are many occasions very underrepresented in these types of forums. So I won’t stop. I tend to not sit still very long anyway. 

But a bit like Lynda, there’s got to be a bit of a personal part in it. We don’t sit back, we just keep going, and that’s just the way our brain is made up, I think. So 2025 to 2026 is going to still be busy. 

Thanks, Jeremy. 

Jeremy Henderson: 

Thank you, Sharlene. And thank you to all of our guests. I’d like to thank you for your expertise and for your enthusiasm. 

The MS Australia Awards shine a spotlight on the remarkable people driving change, compassion, and progress across the MS community. From dedicated researchers, passionate advocates to longtime champions whose impact spans a decade or more, these awards recognise individuals whose efforts uplift, empower, and inspire. 

Now in its second year as an expanded program, the MS Australia Awards include the prestigious John Studdy Award, as we’ve mentioned, alongside the two publicly nominated categories, the MS Research Award and the MS Advocate Award. 

As we said, award recipients were selected by the MS Australia Awards selection committee and celebrated at a national awards ceremony. So to nominate someone worthy, head over to our website. You’ll find all of the links in the episode show notes. 

Thank you again and please join us next time on The Raw Nerve podcast. 

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.