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.Â
Rohan Greenland:
Hello, I’m Rohan Greenland, the CEO at MS Australia, and this is the Raw Nerve. We’ve got something really special today. I’m handing the reins over to a friend of the show, a previous guest, Tim Coetzee. He’s the Chief Advocacy, Services and Science Officer at the American National MS Society. Tim’s coming to us from New York where the Pathways to Cures Global Summit has just wrapped up.
This is a really important summit. It’s basically being convened to look at how we can work better together as MS organisations that fund research to take us down the pathways to cure faster and further than ever before. The summit has brought together MS organisations and scientific leaders from across the globe in pursuit of cures for MS.
Not just another talk fest this is a crucially important step on the right to ending MS. Tim spoke with the MS Australia delegation, our President Des Graham and Head of Research Julia Morahan.
Tim Coetzee:
Hello, I’m Tim Coetzee. I’m the Chief Advocacy Services and Science Officer at the National MS Society of the United States and I’m here with Des Graham, Chair of MS Australia, where we’ve just concluded two days at the Pathways to Cures Global Summit. Over 189 leaders from the global MS movement, representing 15 countries and 20 organizations that endorse the Pathways to Cures roadmap, have been focused on how we can find solutions to MS. So Des, as a person living with MS, how does it feel to have spent these last two days? And what are some of your reflections?
Des Graham:
Initially? Can I say thank you for the invitation? It’s been inspiring and it’s been aspirational. I think the presentations that I’ve seen as I reflect on them as a consumer, if you like, as a person living with MS, it gives me a great deal of confidence that the generations to follow me in terms of my lineage, they won’t have the same issues to confront as I have. And I think the end to MS and the improvement of quality of life for people with MS is just around the corner.
Tim Coetzee:
One of the things that’s been so fascinating is, as I said, we have 15 countries. Scientists from all over the world really just focused in on this, and so global collaboration really takes a lot of time, effort, and commitment. And I’m interested from MS Australia’s perspective, why is it so important to participate in these kinds of collaborative efforts?
Des Graham:
As we know, MS affects everybody differently and everybody differently around the globe. And so MS Australia is proud of the funding that we provide to the MS community in Australia. Our researchers are first notch, they’re fantastic human beings, and we’ve got some great quality research projects out. But we know that we are stronger together. And I think that’s been a catch cry that I’ve heard over the last couple of days. And there’s no doubt that our collaboration across the globe will get us across the line quicker. And so for MS Australia, it reinforces the fact that we need to collaborate and we need to reach across the waters, even though it’s so far apart. We need to reach across the waters to make sure we get to that end quicker.
Tim Coetzee:
So one question I had is we’ve had two days, lots of conversations about stopping MS, restoring what’s been lost and ending the disease forever. Was there a particular light bulb moment for you that just was, I wasn’t expecting to hear this and this excites me?
Des Graham:
Look there’s been lots of great presentations, but to be honest, the one that I really enjoyed listening to was Kevin Dean from the University of Colorado. And he spoke about their work in terms of rheumatoid arthritis and how they have gone about the predictive testings and looking at the BioFilaments and proteins and whatnot. And I guess it reassured me in a way that all the conversations we’re having in the MS field, they’ve undertaken in a way, and we’re slightly behind, but we’re on the right track. And so for me it was like, yeah, this is going to be okay. We will get there.
Tim Coetzee:
I know Kevin’s conversation was amazing, and to see that in another disease, there’s so much progress just says to me as someone in the movement, like you, we can solve this. It’s a big challenge, but it’s definitely doable. It will take a lot of us working together. So maybe you could fast-forward to five years from now when we have another Pathways convening activity where we bring more scientists together. From two points of view. As a person with MS, where do you hope we’ll be in five years? And then as a leader in MS Australia, where do you hope we’ll be?
Des Graham:
So I think they are one and the same in a sense. I think we know certainly from our research in Australia that the people living with MS, their carers align very closely with the researchers. Everybody wants a cure. In five years time, I’m not sure that we’ll have a cure, but we will certainly have predictive factors. And so I think we’ll have those markers in time as we progress. And in five years time, our capacity and our skill sets to be able to define what MS looks like as a predictive test, I think will be a long way down the line. And so I want to participate in that journey and I want MS Australia to sit alongside the US and Canada and the UK and Europe to get to that point together.
Tim Coetzee:
Well, it’s been a delight to have you here. Thank you for coming in. Thank you for contributing to the leadership of the global community and also what you’re doing for people with MS in Australia, but also your partnership with the US Society. We couldn’t be more thrilled.
I’m Tim Coetzee, it’s been a pleasure to be with you.
Des Graham:
Thanks.
Tim Coetzee:
Thank you.
Julia Morahan:
Thank you very much.
Tim Coetzee:
So Julia, we’ve just concluded two days of the Pathways to cures MS Global Summit, a really exciting time here in New York with over 180 scientists, 15 countries, 20 organizations, lots of exciting things happening in our conversations. So from your standpoint as a leader at MS Australia, what excited you about our time together?
Julia Morahan:
Well, I think for starters has just been an amazing couple of days in terms of the energy in the room and the discussions that we’ve had. Everyone has been so engaged and so excited about what we can do together. And I think what really excites me about the Pathways to Cures framework and the idea that everybody’s in this together is there are certain things that we can’t do on our own necessarily very well. But when we come together and we have the power of numbers and all the smart people talking to all the other smart people, we can really make a huge impact. So I just love that idea that everyone’s working towards this one goal and putting everything they have into it and that’s just been so evident.
Tim Coetzee:
Well, I know the conversations around stop, restoring and ending MS, have just been really remarkable, insightful, so much conversation. When you think about those three areas and the three pillars of our strategy, are there particular themes in them that you heard in this meeting that you said those are, I wasn’t expected to hear that, and maybe we ought to explore that a little deeper.
Julia Morahan:
So I think I’ve been thinking very much about the difference between work that can be done still in isolation at particular institutions, for example, versus stuff that really needs that big global approach. And I think what I am really excited about is the end pathway and the prevention space because I think for people with MS saying, “We’re going to give you an immunosuppressive drug and a brain will repair drug and you take it for the rest of your life,” is it a treatment strategy, it’s not a cure. And so I think the end pathway for me is the one that just really resonates. And we had some unbelievably great talks today from people that have been thinking about this for a long time, and also lessons that we can get from other diseases to see what we can do because just having eradicated MS is really what people are after. So I think hearing how far other diseases have gotten in this space has just been fantastic.
Tim Coetzee:
I know those end conversations were a bit of a light bulb moment for me when I’ve heard about what’s possible in rheumatoid arthritis, what’s possible in type one diabetes, and how MS, while it, we have fewer people affected by MS, there’s real opportunity for us to work together on that. So that was one light bulb moment for me. I’m interested, are there other sort of light bulb moments during the conference that you just went, wow, this is something we should also think about?
Julia Morahan:
Yeah, I think absolutely in the restore pathway conversations. It’s just, it’s so intricate and detailed and complex, the work that’s going on there, but just how far we’ve come in scientific terms, a short space of time. And so just the momentum that is happening there and the understanding that we have that we didn’t have five or 10 years ago, I just think has come so much further than I was expecting before I came. And so that’s also just super exciting.
Tim Coetzee:
Yeah, the restore conversations, it’s interesting because just five or 10 years ago, we would not have been able to have these conversations about treatments and clinical trials, rehabilitation therapies to try, changing the connections and community for people. It really, as a global movement, really unbelievable. So if you were to think about the conference and all the collaborations that were happening, we talk a lot about collaboration and the global movement as MS Australia, as a leader in the global movement. Why is collaborating with these groups so important to you?
Julia Morahan:
I think people with MS. Their families, they don’t mind where the solutions come from. And I think for me, we want to just get there as quickly as possible. So I said it before, but the smartest people talking to the smartest people, they don’t care where they’re from. I want everybody thinking about this. I want to reduce all of the duplication and accelerate the outcomes for people. And I think the only way that we can do that effectively is through collaboration.
Tim Coetzee:
Outstanding. I agree. And I think collaboration just does really make us stronger as a community that individually we can do lots of things, but together we do a lot more. So one last thought before we wrap up. It’s five years from now. Fast-forward five years, and we may have another, hopefully we’ve had more convenings, but we’re five years from today. What would you have hoped we have accomplished as a movement?
Julia Morahan:
It’s an interesting question. I think I would really love to be able to predict how people are potentially going to go with their MS. Maybe not predict people that are going to develop MS, although maybe we could get there. But I think one of the big things that we hear over and over again is that uncertainty. And we have a big opportunity at the moment with the tracking and all of the technology that we have now to have a lot more data points to try and understand an individuals MS. And so I think I’d love to be able to say there is no more MS, but I don’t know that’s necessarily a five year goal.
But I think being able to give people a bit more certainty, a bit more preparation, be able to react earlier intervene earlier, so that we can minimize the impact, that in itself would be amazing.
Tim Coetzee:
Well, wonderful. Thank you again for coming to New York and contributing. It’s a thrill to collaborate with you, and we look forward to doing a lot more together. Thank you, Julia.
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