← The MS Trust podcast
The MS Trust podcast
ECTRIMS Patient Community Day: why researchers need people with MS to get involved
01:09:42
Loading summary
Transcript98 lines
- [00:04]
A
Hello and welcome to the Ms. Trust Podcast. I'm Helena and I work here at the Ms. Trust, a charity that's here for the Ms. Community for every Ms. Every day. We are here to provide information and support to help people navigate Ms. Every day. We also are working to drive excellence, equity and consistency across Ms. Treatment and care. And we're powering research into the issues that matter most to people living with ms, making sure those insights are turn into real action. In this episode, we are unpacking the highlights of Ektrims 2025. This is a world's largest Ms. Research conference and we'll explore some exciting developments in Ms. Treatment, the importance of inclusive research participation and how people with Ms. Can actively shape the future of research. So there's a lot to go through today, so let's get started. First, we're going to be hearing from Brett Drummond. He is a co founder of Ms. Translate and one of the organizers of the Patient community day at EC Trims. He's going to be talking together with our own Dr. Claire Winchester, who is the head of research at the Ms. Trust. They'll walk us through the standout findings from this year's conference. Then after that, I'm going to be chatting to Natalie Brassari, who is the founder of an organization called the Nerve of My Ms. She spoke at EC TRIMS about why representation in research is vital, especially from people of black backgrounds. And then finally, I will be joined by Lucy Taylor, who is the Ms. Trust CEO, for a conversation about how the Ms. Trust fits into the world of research and what she made of ektrims. So let's get started. First up, Brett and Claire. So today we're going to talk about all things Ektrind. So I've got two guests with me today. Thank you both for joining me. I've got Claire Winchester and Brett Dumond. Could you start by telling us who you both are and what you did at ektrim? Sad. Let's start with you, Brett.
- [02:16]
B
Yes. So my name's Brett Drummond. The accent's going to give away that I'm usually on the other side of the world from Melbourne, Australia. And I'm an Ms. Researcher by background, but also science communicator. And so I'm co founder of an initiative called Ms. Translate, which aims to communicate Ms. Research in a way that's accurate and easy to understand for people living with Ms. And I sort of attend Ektroms in that role. But I also host the Ecrams podcast and I host a moderate ECRAMS Patient Community Day as well.
- [02:50]
A
Big fan of the Extremes podcast. Always feel like I have to be on my best behavior now when we got another podcast. Not at all.
- [02:57]
B
Not at all.
- [03:00]
A
Right. And Claire Winchester, we've seen you on the podcast before, but for anybody who don't know who you are, who are you?
- [03:06]
C
Yes, you do drag me along quite often. It's lovely to be here again, Helena. I'm Claire Winchester. I head up the research and the engagement team here at the Ms. Trust. So it's my job to not just support research that's happening out there in the world of ms, but also to help to translate it and communicate it back to our audience. The Ms. Trust and the engagement side is about making sure that I'm bringing the voice of people with Ms. To. All sorts of different conversations are happening in the world of ms, with commercial organizations, with the nhs, with the organisations that decide on drugs and medications that can. That can be licensed as well. So, yeah, keeping abreast of research is really important and that's why it's always brilliant to go along to Ektrims. So much comes out of it. It's such a, you know, an annual marker for the Ms. Research world and it's been really lovely to see how the patient part of that, the Patient Community Day, has just gone from strength to strengths over recent years and it's really a really big part of the event now and a big pull for me too.
- [04:15]
A
So let's talk a little bit about the Patient Day, shall we? Brett, you organized it. For somebody who's completely new to extremes, what is the Patient Day and who is involved? And maybe tell us a little bit about what was sort of the powerful moments that came out of it, because I've seen a lot on social media, but it'll be interesting to hear your take on this.
- [04:39]
B
Yeah, so generous to say that I organize it. I'm definitely heavily involved, but I'm very lucky to. Let me start by saying I'm very lucky to have a big team of people that help support that working behind me. But, yeah, so Patient Community Day, this was our fourth iteration of it and really an understanding or driven by an understanding that there are so many highlights and research highlights that come out of the. The massive conference that Ekrams is that they need to be communicated to the people who are most impacted by them, and that's people living with Ms. And more recently also people with other. Living with other neurological conditions. And so really, across the three hours that we have Patient Community Day, it falls right at the end of the conference, we try and do exactly that, communicate the key highlights that have been discussed at the meeting, but importantly the highlights that are most impactful for people living with the condition. And that's not always the same as what researchers would say are the highlights of the meeting. So we really try and make sure that the program is tailored to the topics that we know there are interest in. For people living with Ms. And these other neurological conditions, it's a fantastic event. It grows from strength to strength every year. We had record numbers of registrations this year, record on site attendance, record online attendance during the live broadcast, which I think really indicates how much interest there is from people living with these conditions to hear about the latest research, which is fantastic and also hugely important for the research community. I think that's an important point to make. This is not, this is not a one way conversation. This isn't about researchers talking to people living with Ms. About the research. This happened at the conference. It's also about learning from the Ms. Community. What are your interests? How can we progress research more quickly and hearing from them. And so a really exciting part of the program this year was the fact that for the first year out of the four that we've been doing it, we did have a panel of people with lived experience primarily focused on how they have engaged in research. And it was exciting that we had people really coming from a lot of different perspectives from all parts of the globe on that, on that panel. Because I think that's a really important message to get across to people, is that you really can get involved, engage with this and help drive research forward and then beyond that, and I'm sure we'll talk about this in more detail. There was just some really exciting research highlights that came out of the conference. And I think for me, quite a privileged thing that I can sit up on stage with, you know, leading neurologists and research from around the world and share all of the stuff that we're really excited about to people living with Ms. And there's other neurological conditions around the world. And this year was, was no different. There were some, some really exciting things that had come out of the meeting.
- [07:55]
A
I think it's, it's funny when you work in the world that we do because some of these people who attend these conferences, they are like rock stars, aren't they? Just think it's really cool to be able to talk to them and see them because quite often we just read their papers or we see them on screen and, and we see their names in, in things. But Actually to see them and hear them talk and be there to actually chat to them is. It's amazing.
- [08:15]
B
Yeah, that definitely hasn't changed for me. Yeah, I still have pinch me moments when I'm talking to all of these people who, as you say, read the publications, you know, all of the work that they've done.
- [08:27]
D
It's.
- [08:28]
B
Yeah, pretty amazing.
- [08:29]
C
I was just going to say how lovely it is to see them giving the time to the people with Ms. And having had that gruelling conference when they were presenting and sharing and organizing and all the rest of it, that they really see that the researchers really see. It's important to come back and communicate that to the people who are going to be most affected and give their time to kind of not dumb it down. It's definitely not dumbed down, but to really explain in clear language the implications of that research and what that could mean and how soon that could come into practice, how soon we could see that kind of these things changing the way clinical practice is delivered, you know, the way medicines are delivered, the way therapy is delivered and the advice that people with Ms. Are given.
- [09:11]
B
I mean, I think it's a really important point just to follow on from.
- [09:13]
E
That and.
- [09:16]
B
You know, I get the honour of sort of seeing how all of this comes together. We definitely don't need to twist anyone's arm to be on these, these panels. I don't think across the two years that I've been involved, we've ever had a panelist say that they don't want to be involved. Every person that we've asked to, to be on one of the panels has said yes. And more than saying yes, just because, you know, they feel like there's an obligation to do this, they are genuinely excited about being involved and I think you see that when they're up on stage, there is, there is a level of joy and, and enjoyment that they have in being able to have these conversations and, you know, share all of the hard work that everyone in that industry has been doing that's. That's been presented. So it's, it makes my life very easy when, when I'm up there hosting.
- [10:06]
A
That's brilliant and you've touched on this a little bit, but do you both. Do you think that the Ms. Community is being heard enough in the research world and what has already changed? Because we hear good, you know, clearly things like the patient day is a brilliant step in the right direction, but do you think there's still some things that need to change? Let's throw to Brett First, I mean.
- [10:28]
B
I think the, the key word in that question is enough. So if I was answering that question, I'd say no, I don't think we can ever hear enough from the Ms. Community around this. I think this has gotten much, much, much better since, I mean, I started in Ms. Research in 2006. Makes me feel old when I, when I think back to that fact. But certainly there has been a huge amount of change since I started to now in terms of the ideas of co creation, in terms of listening to people with lived experience as part of this process. I had almost zero opportunities during my time in research to talk to people living with Ms. About my work to discuss how this might move forward. So I think definitely it's been a hugely positive change. Patient Community Day is obviously a big part of that. I think advocacy organizations around the world are doing more and more and more to include people with lived experience in everything that they do. But I think, you know, I feel about this the same way that I feel about everything else. And we were already talking before we, before we started recording about my thoughts around Patient Community Day and already thinking about how can we make the next one bigger and better. I think it's the same in terms of these, these conversations. I always think that there's going to be more that we can do in terms of, you know, including these voices as part of it. And that's, to me, that's the responsibility of everyone. That's why podcasts like this is so great. But it falls on researchers, it falls on organizations, it falls on people living with these conditions to just keep pushing for that change. That's how we've got to this point and I think that's how we'll continue to grow it over the coming years. But Claire, you're going to have huge insights into this as well, I think.
- [12:18]
C
Oh, I think I agree entirely, Brett. I mean, it's definitely moved a long way. It's definitely the case that more and more projects are set up with a space for patient voice, you know, built into the design of the whole project. Sometimes it might be a little bit bolt on, but actually more and more we're seeing that at a true co creation, not just deciding, not just reviewing the activity that's happening, reviewing the outputs, but actually being involved from the stars and setting the priorities. What should we be researching? Should we, you know, is this a good thing to research? What will have the most impact? Where can we get the best value from our kind of research funding in order to get things that have the Biggest impact. And the other thing that where we. The other sort of dimension where we can do more is probably to increase the diversity of people who are involved in with research. It should be something that everybody is encouraged to know about, to take an interest in and to feel completely welcome to, you know, to be involved in those conversations. I'd love to see more done there to make sure that people from minority backgrounds or, you know, with other kinds dimensions, other dimensions of diversity is what I'm thinking of making a really inclusive community. We need a really inclusive community involved in Ms. Research and that's something that we can still make a difference on, still improve.
- [13:51]
A
Brilliant. Let's talk a little bit about what you. What you saw, that the research that came out of it. Let's sort of start with the. There was a few medical breakthroughs, research findings. What do you think people with Ms. Should know about? What are the sort of, the top takeaways from. From what happened? Because there were loads, obviously. Let's go to breath first.
- [14:14]
B
I mean, I think for me, probably the biggest research highlight that has the potential to impact the lives of people living with Ms. Was the results of the CCMR2 clinical trial that's obviously UK based here at the University of Cambridge, out of the Cambridge Centre for Myelin Repair, which now is the third trial to have shown that myelin repair is possible in people living with Ms. I think that's, you know, another big step forward. I think most people now see remyelination as the next step forward in the clinical care of people living with Ms. In terms of being able to potentially repair existing damage but, you know, delay disability progression. So the fact that we now have another trial that shows, yes, we can do this and I think really importantly as well, we know how to design trials to do this and we know how to measure outcomes is a really big thing. Now, to put that into context for people that may be listening, the results, while the fact it was a positive trial, aren't strong enough yet to support the use of these treatments, metformin and clemastine, in people living with Ms. It was a very small result. There wasn't anything in terms of clinical benefit observed yet. Now we think that may be around length of the trial and you'd need to, you know, the trial would need to be extended for longer to, to really see anything. But it sets the scene now and really says, yes, this is the area we need to be looking into. This is an avenue that we can certainly get successful in. It's now what are the Next steps that we take in terms of is it different, different compounds that we use, is it, you know, extending trials? But for me, that was a, a big thing coming out of the conference that I think people living with Ms. Should be excited about.
- [16:13]
A
And Brett did a really brilliant podcast with Dr. Nick Cuniff who was in charge of the trial. And we'll link to, to that in the show notes as well because that's well worth a listen. How about you, Claire, what did you, what did you think was the sort of interesting bits?
- [16:28]
C
I think I was really interested in a lot of the stuff around rehabilitation actually and a lot we've seen a lot more interest in aging and Ms. And people looking at what's going on there, untangling some of the things that happen as your brain and body age when you have a condition like Ms. And also the any kind of the overlay from going through menopause, for example. Now these are things which have only really begun to be really studied in detail fairly recently. Even though it's something we're, you know, all going to do age that is not menopause. But I think the messages are there are really clear as well. It's really strengthening that message that brain health is really important and the actions that we can take as individuals to protect our brain health are really well established and there's good evidence and that's really nice to see. And that'll help a lot of health professionals in communicating with their patients. It'll help people who are looking for ways to become whales to ways to feel more in control of their condition and know that they're doing something really, really valuable for their health. So yeah, that was the thing I really took away was that kind of focus.
- [17:43]
B
I don't know if you also clear one of the. I completely agree that that was a massive part of it. And the thing that I kept getting out of those sessions and that kept coming up during patient community day and we also did a podcast on this that will come out later. Is that around the rehabilitation part should not be an afterthought. This isn't wait until things go wrong to start doing rehabilitation. This is something that from basically the very first conversation when a person's diagnosed, this needs to be being implemented. Yes, disease modifying therapies are important, but rehabilitation needs to be there from the very start of everything. And I think that's a maybe not a new message for people working in the field, but it's certainly something that now is being sort of discussed really strongly to make sure everyone is on the same page with that.
- [18:31]
C
Yeah, absolutely. And it's not just rehabilitation, it's pre habilitation. You know, let's get ahead of that of any kind of functional decline. Let's absolutely take the lifestyle steps. We need to make sure that we're protected as far as possible. So, yeah, I think that will make a big difference to people.
- [18:48]
A
That means all the physios that we've spoken to on the podcast will be very happy because they always speak, they always talk about these things. They always talk about, you know, the analogy of brushing your teeth. You're doing it to prevent holes in your teeth. You're not really doing it to, to fix that. You already got some holes sort of. That frame of mind should be there with, with Ms. As well. I know one thing that they've spoken a lot about, coming up to, to egg trims. I don't know if any of you would like to try to explain it, but the McDonald criteria, that's something we, we've heard about for a while now. What does the changes actually mean for people that are sort of in the process of getting diagnosed? Because I guess it doesn't really matter too much for the people who have already been diagnosed.
- [19:35]
C
Well, I guess yes and no. I mean, there might be some people who are diagnosed with something like radiologically isolated syndrome or CIS or something where they haven't, maybe they haven't accumulated enough evidence for, for their neurologist to give them a diagnosis yet. This is Ms. And we can begin to treat it, but there will be, so there might be some people, but it'll be a very small number of people who might actually say, actually maybe we should go back and revisit this diagnosis. But for people that are coming to, coming to consultants now with, with symptoms opens the door for an easier path to diagnosis that's potentially using less invasive techniques, being able to take evidence from things like optic neuritis that they couldn't use before and hopefully streamline the process, allow people to come to a diagnosis faster and therefore become. Be treated faster. And we all know that early treatment is key in ms, of course.
- [20:38]
B
Yeah, I mean, I completely agree. I think from all the conversations that we have with neurologists around this, the new criteria to really try and reflect those situations where in the past neurologists would have been very confident that a person has Ms. But under the criteria couldn't diagnose them as such. I think that's one thing. So we can get, as you say, people diagnosed quicker onto treatments earlier and I think the other important point around it, and one of the key considerations when these ones were being made, was let's make sure we have diagnostic criteria that can be applied globally. So there's been a real point around, well, let's not include something that requires a piece of machinery that, you know, three centers in the world are going to have. And if you're living in different parts of the world, you're never going to be able to do this. That's really been taken into account. So I think, you know, for people living in different parts of the world, this may also make the pathway to an Ms. Diagnosis easier, which I think is certainly important, and goes back to, you know, points around diversity and thinking about the fact that Ms. Is a global disease and we need to really be considering that positive.
- [21:52]
A
So we spoke a little bit about the. You were saying about rehab, meditations and menopause. What's another thing, because I've seen a bit of lifestyle changes, there was a bit of diet and exercise, stress management. Is there anything that from here that you think could make a difference from, from people living with ms?
- [22:11]
C
I think the big highlight, the big headlines came around ultra processed food. And I thought that was a really nice deal. It's the kind of thing that sort of, sometimes you just need that kind of thing spelled out. I don't think anyone thinks ultra processed food is good for them, but, you know, how bad it might be is always worth exploring. How about you, Brett, what did you like?
- [22:33]
B
I mean, I think one of the things that I was really pleased was a topic that seemed to be discussed quite a bit in the rehabilitation session was mental health. I think we don't talk about it anywhere near enough. We, people who are involved in the space know all of the statistics. We know that people living with Ms. Are at higher risks of getting depression, anxiety, so higher rates of suicide than the general population. We know that this is there. Do we talk about it enough and talk about management strategies of enough? Probably not. I mean, there is often a focus placed on the physical symptoms and, you know, these maybe have been in the past left a little behind. I would put in that cognition was also a massive topic@ekrams:2025. But I think the fact that, you know, we're now including mental health is something where we're openly discussing it and thinking about strategies that this can be implemented more. And what are the, what are the clinical pathways where this can happen? Because it's not, you know, this isn't necessarily a neurologist thing. The interactions that people have in their appointments with their neurologists aren't necessarily going to be sufficient. Neurologists don't necessarily have the time or space to cover that in appointments. So how do we make sure that there's a whole system of people around the individual to make sure that all of these symptoms are managed? But, yeah, for me, I think that was a huge, huge positive that that was part of the discussion.
- [24:05]
C
Absolutely. I think in the uk, we know that access to mental health professionals can be quite patchy and it's sometimes difficult for people with Ms. To get a referral. But I think making it really clear that that's something that we need to think about when we're configuring services and commissioning services for people with Ms. We need to have mental health and cognition in the mix there.
- [24:26]
A
So what do you think the outcome will be from something like. Like that? Will that mean that it will make it easier to. To get appointments? Or is it because it's all good that they're talking about it, but then how will they follow through, do you think?
- [24:40]
C
I think these things kind of, yeah, I think these things, they do take a little while, but it's evidence that Ms. Service leads can then take to their commissioning, commissioning body and say, look, we've got a service that does. We've got a good relapse service, we've got this clinic, we've got that clinic. You know, we're looking after most of our patients, but here's a big chunk of unmet need and it's for. And it's for organizations like the Ms. Trust, then to help with that, to kind of support the business case around. Well, this is something that will really make a difference and it's not just to how people feel, but to how well they adhere to medication, about how they engage with lifestyle modifications, about. They're kind of about how, how quickly they come to terms with having. Having a condition like Ms. And the kind of social and economic and, and societal outcome from having people much better supported much earlier on will. Will really come, you know, will come into the planning phase and will become more. More important. And I think it's for people with their masks to say, hang on, you know, this is a service I need, then I can actually voice it as well. I can point to the paper. This has been said, this is important and it should be offered and, you know, it. Maybe it will encourage more people to just ask, you know, just ask for that support. It's part of Ms. You, you know, the, the symptoms are part of ms, you should absolutely be getting support with them.
- [26:06]
A
And were there any sort of interesting things you'd mentioned, cognition, anything there that we could, you know, if somebody is struggling with their cognition, are there some, you know, ideas or things that could be tried out here or something that you can approach your Ms. Team to ask about? Or is this too early days?
- [26:26]
B
I mean, I think there's. With any conversation we have around this, there's layers to it in terms of this. I think one of the interesting things that's being discussed at conferences around this is how effectively are we managing. Sorry, how effectively are we monitoring cognitive issues in people living with ms? And I think there is debate still around, you know, how. How effective are the tests that we put people through for this, are we picking up when people are actually experiencing cognitive decline? And it's a hugely important topic because there was a publication, you know, only a couple of months ago that, that showed there is a group of people living with Ms. Who have minimal to no physical symptoms but experience, you know, significant cognitive decline. So it is really important that we, that we're putting a focus on it. But if we can't detect it, how do we actually go about managing it? And then in terms of the management side of things, if we go down to that layer, I think there's still a lot of work to do. I think some of the best things that we have tie in with things that we've already talked about. We know that there are healthy lifestyle, brain health activities that people can be undertaking that help preserve cognitive function to a degree. It isn't something at the moment where there's just a pill that you can take that's going to preserve cognition for longer. So I think it's. Improved monitoring is going to be a big thing. People thinking about it themselves, monitoring it themselves, and sort of trying to get an understanding of, well, how is my cognition today compared to yesterday, compared to last week, the support networks that people have around them to also be taking note of that. And maybe, and this is true of cognition, this is true of mental health. You know, it's sort of everyone pitching in for that. But yeah, I think there's still a lot of work to be done in terms of how do we try and reverse this.
- [28:26]
C
Yeah, I think it's still the case, isn't it, that if you, I mean, it makes sense if you think about it. If you're very fatigued, for example, or in. In. In. In kind of constant pain, then things like thinking and memory and mood are profoundly entangled with that it's very difficult to unpick what's going on. So. Absolutely, if we can find ways to really show what's going on and show people and also do so in a way that doesn't make people feel stigmatized by the fact that they might be struggling with their thinking or their memory or, or having, having mood concerns, then yeah, I think it's, we have to keep that conversation going, don't we, and kind of again, encourage people to seek help for themselves and talk to people around them.
- [29:15]
A
Yeah. So talking about being stigmatized, bringing back what you were saying before about ultra processed food, that's a bit of a hot potato, isn't it?
- [29:24]
C
No one likes to feel judged, but a hot potato would be great.
- [29:27]
A
Jack potato is good, but not the hot, hot fried. No, what I was thinking was you mentioned that it sort of came up that it, that it obviously is bad, but what was the actual things that they were saying? What impact does it have on, on disease progression? For instance, today? Is there anything like that that people really need? Because you said people need to know. So what is it we need to know?
- [29:55]
B
I think one of the things that we know around the healthy diet versus the processed diet is really the, the inflammatory effects that it has. We know that a healthy balanced diet that's high in, high in vegetables, high in fruit, tends to promote less inflammation in the body. And eating fried things tends to, you know, sort of reinforce that, that inflammatory activity that's, that's happening. So I think as a general rule, that sort of, when we talk about diet, avoiding those things that we know that can promote inflammation, because we know that's a big problem in, in people living with Ms. Is, is what you're doing and you're trying to reduce that. Now in terms of the best diets and the worst diets, I think that's still a question that we don't really know. And the messaging is just still, you know, try and do what we recommend to the general public, which is a healthy balanced diet is the best way to go. But yes, I still think there's the mechanisms and things around that. The more we can understand, the easier it will be to go, yes, yes to this, no to that. But you know, I still think there's work to be done on that.
- [30:59]
C
Yeah, sometimes it's just about making a few simple healthy swaps. It doesn't have to be about overhauling everything. Just saying, actually instead of this, I'll go for that and picking something that's not, not processed in the same way.
- [31:12]
A
We will link to some of the bits that we've been talking about as well if people want to find out more. Because I'm guessing this is, there's a, there's a lot to, to be seen that we can't all talk about today, sadly. Claire, how does the Ms. Trust translate some of these complex research into something is understandable and useful for, for people living with ms?
- [31:36]
C
I think the first thing we try to do is look at it, as Brett said, through the lens of what's going to matter to people with Ms. Right now. And I mean I know the stuff looking in the mid long term is also fascinating. There's all sorts of new molecules and drugs and things on the horizon but we know that the journey from starting to test a new drug to actually getting it licensed in the UK for people to take could be decades. So I think the first thing to do is to look at the, look at the research that is something that people can do for themselves or people's nurses and doctors can start doing as routine practice. So and then it's about putting that research in context. Why is it important? What against the backdrop of what's gone before, what's the understanding? How is this change the understanding that we have? We did some nice little sort of bite sized reporting during the event. Obviously podcasts like this where we can actually sort of just get together and chat about things and give a flavour of what's happened. And if we can encourage people to sign up for the Patient Community Day again next year, that's, that's amazing too. But we're involved in, in supporting research all year round and talking about what comes up all year round as well, encouraging people to get involved with signing up for registries and being part of research that way. But it just comes down, as I say, mostly it comes down to thinking about what people with Ms. Want and what can they, what they, what's going to have the biggest impact on them.
- [33:17]
A
And I guess this was something that was spoken about at Ektrim Zebrit as well about how people can actually get involved in research. And I mean you can get involved in research in many different ways. You can be part of a trial, but you can also be in part of the actual, you know, making the trial to start, set it, set the trial up or, or shaping research priorities or sharing lived experience like on your patient. How, if you want to, if you're listening to this and you feel like, well I want in on that action, how's the best way to go about it? What Would you say, Brett?
- [33:51]
B
I mean, I think one of the things that we should say, and it was, I think it ties in nicely with almost everything that we've talked about on the podcast so far is that one of the other exciting things that happened at ECRums 2025 was the launch of, of Trusted. Obviously I'm in Cambridge as I'm recording this so close to the, to the team there. I know Ms. Trust support Trusted and so I think this is something that, and you'll probably talk more about it and there'll be more coverage of this in the future. But Trusted is a really good UK wide initiative now where people can sign up to essentially allow their clinical data to be included, but also to be selected for trials that they might be eligible for. So this is a really good way of helping research in a lot of different ways, but also getting engaged in the research space, hearing about updates that are coming out of all of that, but addressing, I think, you know, it came up right at the start, Claire mentioning it. Inequalities across healthcare is another big thing that Trusted is, is looking at. And so making sure that, you know, as many people across the UK living with ms, coming from lots of different locations, you know, lots of different ethnicities, is hugely important for research to be able to be representative of what we know Ms. Is. So, you know, I think for me to give the plug to the Cambridge side, to give the plug to something that Ms. Trust is supporting and that was officially launched at Ektrams, I think Trusted is a big way around that. And then, I think, you know, more broadly than that, it is really just about being interested in and engaged in what's going on. I'd say, you know, follow places like Ms. Trust who are doing a great job of promoting the research that's going on. Find, you know, four or five sites that are talking about Ms. Research that you think are trustworthy. That's a big thing. You know, there is for every one site that's doing a good job of communicating Ms. Research, there's a lot that probably aren't accurately reporting what's going on. But find the ones you know that, that work for you and then use your voice. I think that's, that's the biggest thing. When you see research that you think is great and speaks to you in terms of its generating outcomes or addressing things that you think are important in your life, shout that from the rooftops and then that leads to more progress. I mean, that that's exactly how we determine what topics are included on patient Community Day. So thinking to forward to Patient Community Day at Ms. Toronto, that's what we're going to be looking at. That's how we decide what topics we cover from the conference. So I think it's, you know, be, be active and be vocal. I think a lot of times people think, what's it going to matter if I say something? It matters hugely. And then if one person does it, other people see that you're doing it and then they start to contribute to that conversation. And that's where we get the change that we've seen over the past 20 years and where we'll continue to get the change that I, you know, hope we get over the next 20 years.
- [37:06]
A
So if you want to contact Ektrims and yourselves, how's the best way to go about doing that? Go to the website.
- [37:13]
B
So, yeah, so we have the, the Patient Community Day website. So ektremspatientcommunity EU is a great place to go and that's not just to find out about Patient Community Day, but also about all of the activities that our supporting partners are doing throughout the year. So there's a blog section on that page. Now we have 42 supporting partners from 17 countries across five continents, I think roughly off the top of my head, who are doing amazing activities throughout the year, 365 days a year. So you can stay on in touch with what they're doing through that page and you can also sign up for. There's a button to sign up for the newsletter where you'll get emailed updates from all of those supporting partners as well as everything that's happening around Patient Community Day.
- [37:59]
A
Do you have anything to add, Claire? I was just going to say I've always liked to plug Ms. Register in these things as well. They're a good one too.
- [38:08]
C
Of signing up. So if you're. The Ms. Pregnancy Register, also really important. And the Ms. Register, the larger data set in the countries that have had an Ms. Register for a long time, they've been able to, to develop some, you know, really incredible insights and really great research and it's that we're starting to get that in the UK as well. So it's. And obviously people can sometimes be a little bit concerned about their data security, but these things, things like Trusted and the Ms. Register, are really, really careful with your personal data, so there's nothing to fear there. It's entirely anonymized and nobody can tell it's you, but what you're doing is you're helping to, you know, you're Helping to produce a great data set that can be used in research. Trusted, I think, is really exciting. It really exciting because it's going to mean that if you happen to live in a place where you don't have a, there's not a very active research community at your particular hospital, then you're not going to miss out. And I think what we might have said in the past would have been, well, you know, go and talk to a consultant and maybe they'll find out what clinical trials might be available for you. But with Trusted, you can kind of go straight to the heart and find the stuff that really get on those trials if you need to, if you can, if you're eligible. So there's lots, lots and lots of exciting stuff. But don't rule out just, you know, being that patient voice as well in, in other projects. They don't have to be projects that are about, about drugs that involve you taking kind of experimental medicines. They could be, it can be research about treatment plans, it could be research about rehabilitation and activity your diet. It could be about, you know, the benefits of coffee and community. You know, there's lots of research happening that's very, very different. And not all of it is invasive and, and not all of it is involving drugs. So there's bound to be something out there, even if you're feeling a little bit nervous about it. And I bet, like Helena, once you get started, you'll be forever signing yourself up for new trials.
- [40:22]
A
Yeah, it's interesting because I feel like it gives, you feel like you're giving to the rest of the Ms. Community, but you also, you're finding out things and you're learning things and it's exciting, exciting. It gives you hope for the future. And actually that nicely ties me into the last question that I have for you two. Looking ahead, what gives you hope about the future of Ms. Research and care?
- [40:45]
C
Well, I would say it's the fact that we are listening more and more to people with Ms. About the priorities. You know, for a long time it was about looking for developments and things that were quite easy to find or easy to fund. And now it's much more focused about what are the difficult problems in Ms. And how do we tackle them. And you maybe, you know the kind of anecdote about the man in the dark looking for his keys and said, well, did you drop your keys there? No, but I'm underneath the lamppost. I can see here. I just, you know, I know my keys aren't here, but this is where I can see and I think we're now really starting to open out that light and kind of shine the light in different places where the keys might actually be, if you know what I mean.
- [41:28]
B
I mean, I think for me the biggest thing having come out of an Ektrom's conference not too long ago is that you see how big and how committed this community is to making change. And I think that goes across all levels. I mean, we had a record attendance in Barcelona. Claire and I were talking before it was, I think the numbers were over nine and a half thousand people joining on site and online. You know, working across so many different areas of research. We're talking, you know, 10 on sessions going concurrently, four sessions a day or something, seven presentations in each session. Like I'm not going to try and do the maths on the spot around how many presentations that is, but so many different things being discussed. And then as Claire said, the fact that then, you know, at the end of that we then have a, a really full lecture hall, giant lecture hall of people living with these conditions who are getting to have face to face conversations or online conversations with the people who are driving this research forward. I mean, you can't come out of an event like that without being hopeful of, of where we're going to go. Because I think once you have a community that is so driven and so dedicated and so inclusive to including everyone as part of that process, result are going to happen. You know, it's the one thing, as someone who used to work in a lab, progress is frustrating. Progress is much slower than we would all like it to be. But you know, you can't help but make progress with everyone working together like that. So I think for me that's, that's, that's the biggest thing that fills me with hope that we're going to continue to make strides forward.
- [43:15]
C
It is really, really exciting.
- [43:18]
A
That's fantastic. Thank you both so much for, for chatting to me and letting me know what, what I missed out on.
- [43:25]
C
Oh, next time.
- [43:27]
A
I will pop lots of links in the show notes because we've talked about a lot and I know that there's loads of videos on the Ektrons website site as well. So we will link to all of those. But thank you both so much and have a nice time in Toronto then next time.
- [43:45]
B
Thanks very much.
- [43:46]
C
Thanks Elena, always huge pleasure.
- [43:48]
A
You reached the middle of the podcast now and this is where you sometimes would find adverts. But as for a charity, we don't do adverts. But I would like to take this opportunity to Just talk through a little bit bit of Ms. Trust resources that we have. And in the chat between Brett and Claire, we've mentioned quite a lot of different things. We spoke about the McDonald's criteria, we spoke about cognition, and we spoke about diet, and we spoke about research in general. All these things are on the ms.trust website, mstrust.org and we have an ETA set that has got an awful lot of these type of things. So, for instance, if you wanted to learn more about MSN cognition, you could look there or Emerson fatigue or MSN diet. So head to the Ms. Trust website to learn more. And now we're going to be listening to the interview with Natalie. I'm here today with Natalie, who is an Ms. Advocate and founder of the Nerve of My Multiple Sclerosis, who attended Ectrim's this year and last. And we're going to talk a little bit about your experiences there. But before you start, for anybody who doesn't know who you are, Natalie, would you like to tell us a little bit about yourself and what you were doing at Deck Trims?
- [45:07]
E
Well, my name is Natalie Basari, and I'm the founder of the Nerve of My Multiple Sclerosis, which is a nonprofit patient organization and we support and advocate for black individuals with multiple sclerosis. And this year I was at EC Trips because we wanted to kind of let people know what we've been up to since the last time we were there. Because we came there, we were, you know, a bit naive. We didn't know what to do and stuff like that. We were exhibiting. But I think this time we kind of had an idea about how we wanted to present ourselves. But unfortunately, I was feeling a bit, a bit sick, so I didn't get to do as much as I wanted to do. Most of the time I was in my hotel room and just trying to get myself propped up and then go back and, you know, join in again. But, yeah, it was mainly just to kind of let people know where we were after a year, what we've done. Because we kind of expanded from just being in the UK to we now actually might as well say, but we now have an NGO in Ghana and we have an NGO in Nigeria. So we've been looking after patients there as well. And so we kind of wanted to reflect that in our exhibition. I also did like a talk there as well about our work into, you know, Ms. In the Black, in black communities. So it was just something that we just thought, yeah, why not? We want to do it this way.
- [46:40]
A
I can imagine with extremes being so huge that it's quite overwhelming as well. And if you're feeling a little bit poorly to start with, it's.
- [46:48]
E
It's.
- [46:48]
A
Yeah, so much. So much to look at and so much to do.
- [46:52]
E
Exactly.
- [46:54]
A
Last year you kindly wrote us a blog about your experiences at Egg Trims and I remember you included a call to action which was to get more black individuals to attend the conference. So since last Egg Trims, do you think there's been any progress in getting black communities involved with Ms. Research?
- [47:12]
E
Well, to be honest, I was actually. I was really impressed with this year, to be honest, because I don't know whether it was just my effort, but it was, it was definitely different from last year because I saw people from different cultures there. A lot of people from Africa came. A lot of people who were African but were living in other countries were there and there were researchers. And I was actually, I think I was amazed of how much people have heard about the number of my m. I just think we're still quite small. So I think maybe because it was word of mouth or something, but you know, we were hearing a lot that what I think whilst I was in my hotel room we kind of took a break because I wasn't feeling too well. And then when I came back it was just like so many people were looking for you. And then when they came just to hear that where they were from. We had some people from South Africa, I think a couple from the Congo, some from America, Nigerians. Ghan. There was just like a mix. A lot of Asian people, Hispanic, Mexican people. It's just like a. I was like, did I come to the right place? It was so. It was completely different from how it was last time. And it was actually really nice to see because last year I felt a little bit maybe because it was our first time there but you know, we were kind of like the only ones like black led organization that was exhibiting. And so it kind of felt a bit alone, like kind of lonely. And then even though people were very interested in us because we're not the usual kind of organization to exhibit there. But then when the. I think the Americans came on the second day and when I say Americans, I mean like Dr. Mitzvah Williams, she's like a black, she's a fabulous black neurologist in America. She comes quite a lot to Ektrims and with her came the we are Ill team. They're like a. A charity in America that looks after, I think black women with Ms. And I was really happy to see Them because I'm a massive fan of theirs and to see them there was amazing. So they were all kind of coming together. I brought my neurologist because we have, like, not my own neurologist, but we have like an Ambassador Neurologist, Dr. J. And Till this day, we're still saying that he's the only black neurologist in the whole of UK and Ireland who specializes in Ms. Because there is like a quite a handful of black neurologists, but they don't specialize in Ms. So he came along with our sections last year. He couldn't make it this year, but it was actually nice that he came along and we had them there as well. And it's even better this year. So I was just like, wow. Because it kind of feels like this is how it's supposed to feel, because you shouldn't. You should be able to see people who look like you as well and just be comfortable. And I know that a lot of black people, when you. They go into spaces that they don't see people who look like them. Some people feel a bit. I mean, I. I don't feel like that because of just how I was brought up, but a lot of black people, when they're in a room full of white people, they tend to feel like, okay, I'm. This is not where I'm supposed to be. I don't feel comfortable. So it was nice to see, like, a lot of different cultures there. You just felt comfortable. Like, this is how in reality miss Looks like it affects everyone. And it was showing that in actream. So it was really nice.
- [50:27]
A
That's really encouraging to hear because I do remember reading your blog thinking, oh, well, this is a bit disappointing considering that it is a world conference. This is not just, you know, just uk. I mean, in uk, it's bad enough if it's not representation, but it's like, if it's a world conference, there certainly needs to be more people than just people from the. From the. The white community. So. So that. That makes me happy to hear. So you said about people, not sort of. If you come into a room and you don't see people that look like yourself, how do you think that researchers who are, like, trying to get people to come to, you know, their trials can actually do a better job with building trust with underrepresented communities? Because I guess this is a. This is a struggle that we see all the time that people might want to reach out to communities, but they're not. They're not getting anyone to sort of want to join into their trials.
- [51:19]
E
Yeah, I mean, I think I found. I think I. I found something a bit odd about the whole thing at first because I actually thought black people didn't actually want to do research. When I started doing my community events, found out people actually do, but they don't know where to go to find these things. And I think one of the things that I've noticed that when I. I think it was one time, I think it was King's College University, they asked me to come along. I think it was like a Parkinson's kind of, like, event thing. And they were trying to find out, you know, what is it? What can they do to bring more black people, to get them more involved in the research? And I think they were more like, we do put the research out there. But the way they said it is like, if somebody was coming for an appointment, their leaflets would be there. But I know black people, when it comes to being in, like, medical settings, you're not going out of your way to pick something up to read and stuff. You just want to get over. Get the appointment over in Dublin and then just leave kind of thing. So I was saying that way you would never get black people to be involved. You have to be intentional about going up to them and explaining as well. And even when I even had a few people in my community that I found out about certain, like, trials that were happening, I would lead them to that direction. They'll say, okay, I'll. I'll find some time and I'll go and do it. But then when they. I think one lady reported to me that she left quite instantly as soon as she entered because she said the researcher, the way he was talking, he wasn't really explaining to her what was going to happen in the, you know, this clinical trial. And she was a bit worried. And when she was asking questions, I don't know whether she. She didn't understand what he was saying. It was very kind of technical and maybe scientific jargon that she felt bad always asking, sorry, what did you say? Sorry, can you explain that? So she just left because it was just too much for her. So then I realized, okay, there's more work to be done. It's not just about saying, okay, look, you know, showing black people this is where clinical trials are, get involved is actually when they're in there, that. That is another issue as well. So I think it is just. I think I'm working even with Queen Mary. There's a. They're doing like a thing where they're trying to make Ms. Clinical trials a bit more inclusive to the black community. So we've kind of had this kind of discussion on cultural sensitivity and things like that. Even the word clinical trial freaks people out, maybe different ways of approaching that. But I know a lot of people don't go forward to them when they ask them to come along. And I think it's just that there's just so much going on. I think even if you are, you know, a black led organization, there's so much work to be done. So even I find myself, I just don't know, like saying yes and no to things at first. When you first start, it's yes to everything because you just want to get involved, you know, bring it back to the community and bring something. But now it's just like there's so many things going on. You have to be careful of what you say yes and no to. So it is difficult. But I would say that for people like researchers is to have that patience and know that it's not like a straightforward bringing someone in, asking questions. You've got to be really sensitive with the black community. There is a lot of fear, a lot of anxiety and pain in there. Not everybody who is black is like that, but there is a large majority and some English is not their first language. You have to consider that as well. So I think it's just having to study those things and knowing it's not that straightforward. You have to take your time and be patient and really learn how to make that environment really comfortable for people from those kind of backgrounds.
- [55:03]
A
If somebody who's listening to this might be a researcher who is struggling to recruit people to a trial, would it be right for them to sort of contact you and chat to you about getting some ideas if they're really stuck?
- [55:17]
E
Yeah, because that's what works. Like I said, I'm doing that with a team in Queen Mary, a couple of researchers, just to let them know about cultural sensitivity and things like that. And they said that they've got so much valuable information from it because I think they tried to do like peer researchers where they recruit black people with those conditions to interview those people as well. But I always feel that I still separate in you because even though you have recruited them to give you that information, you, you know, ultimately you'll come a point where you have to be in front of a black person.
- [55:50]
A
Yeah.
- [55:51]
E
You need to learn from that. You need to be part of that too. I know there's, there's a gap and I'm always happy to help. So whenever, you know, I always do it. I don't mind. And I want this gap closed because the fact that there's this gap, the fact that it's 20, 25 and there's a lot of research out there and black people are not on it, we still don't know why we get the disease so aggressively. And that makes me sad because we can so much learn so much from this, help other people and find out maybe how to prevent. Because what hurts me is that when we've come to the point of, like when I hear in conferences about prevention, we don't even know why they talk about preventing. Yeah, it's just kind of like it's sad that you can't really get involved in everything because, you know, you're not part of it kind of thing.
- [56:41]
A
Yeah, yeah. Sometimes when you see social media posts about, you know, black eyed organizations, there will be people popping up in comments and sort of saying, oh, why can I, why can't I be involved in this? Why can't I come? You know, white people talking about it. But actually what you're saying is they should come, they should come in, they should come and listen.
- [57:01]
C
Yeah, yeah, definitely.
- [57:02]
E
Everyone should be involved knowing what's going on because it affects, I mean, as much as people don't think it affects them. Like someone was saying, like, you know, white people don't because sickle cell doesn't happen to them. That, that's why they don't listen to us. That's why they don't really care. But people don't know that sickle cell does affect white people as well. There's some white people who do have sickle cell, maybe not that many for them to be campaigning about it, but ultimately, when a black person has sickle cell and they need a transfusion, it has to come from a black person in their community. But it just shows that we do all still need each other at the end of the day.
- [57:43]
A
This has been super interesting, Natalie. I think it's clearly a lot of work that needs doing, but it's really encouraging to see that you, you felt that egg trims has at least changed in the right direction. We're just going to keep on at it, I guess.
- [57:56]
E
Thank you.
- [57:58]
A
So to wrap up today's episode, I am here with Lucy Taylor, our CEO. And I'm very excited because this is the first time you will come on to our podcast. And for people who don't know who you are, maybe a quick introduction. Yes.
- [58:11]
D
Hello, Helena. It's really lovely to be doing this. And as Helena mentioned, I'm the CEO of the Ms. Trust, something I'm very proud to be part as well. So it's really nice to get a chance to do this and talk to you today.
- [58:23]
A
Thank you so much for coming. And you also went along to Ektrim this year. What were your impressions? Was there anything that you thought was like a big standout moment?
- [58:32]
D
I mean it was amazing. I think the first thing was it felt such a privilege to be there. I hadn't appreciated the scale of the event. Nine and a half thousand people. And it's kind of mind blowing but really humbling. The kind of people coming from all over the world and the size of that community of people working to in research and to learn more about research about Ms. And that's something really exciting. And it felt really positive as well.
- [58:57]
A
Yeah, it's such a massive, massive.
- [59:00]
D
And so I think the positivity was something that came through for me. You know, the people really wanted to kind of learn and share and progress things and there's real passion. You know, people have worked in Ms. And research from that area all their careers and that was really incredible. So there were lots of exciting things. I think definitely a standout moment for me was the Cambridge research, the things that they announced about the revyelination trial and that was something. There was a real buzz around the hall. People were kind of running through the corridors to get there because there was. The word went round that was a big announcement and that felt really hopeful and positive. Another takeaway for me was about the new McDonald criteria. And so the criteria that clinicians use diagnosed Ms. And they've just been published and revised ones. I think it was 2017, the last ones came out and that feels like a big shift in the world of Ms. And there were some early studies that people were sharing that sort of indicate that they think that quite a few more people are going to be diagnosed with Ms. Now using the new criteria. And there's also indications that means that people will be diagnosed quicker hopefully as well, which again is quite a positive thing because we all know in terms of treatments and people getting the support that they need quicker with that. So that, that felt really interesting. There were so many different things that kind of, you know, I found, you know, you can hardly absorb it all, but it felt really positive. But for me, kind of really what I took away from it is the backdrop to all this exciting change and all these developments is that actually people with Ms. Are still struggling on a day to day basis. To get the support and care that they need. And that's really hard when there's these amazing advancements on one level and on another level, on a day to day today, you can't get to speak to somebody and, you know, we all know the challenges in the NHS and things like that. So it struck me that that's something that's important for us as a charity to address. We've been doing quite a lot of work on our strategy recently and really thinking about, you know, how do we support people on that journey, you know, how do we step in when there's gaps and stuff like that. So the first thing we spent some time on was thinking about our purpose as a charity. What are we here to do? What is the difference that we want to make? And so we did consult with the Ms. Community about, you know, the difference that they want us to make and how they want us to support them. We defined our purpose as being here for everybody living with ms, to give them the knowledge and confidence they need to feel more in control of their Ms. Today and every day. And I think for the Ms. Trust, that every day and today, part of it is really important because we want to be there for people with those day to day challenges and that people live with. And so for me at Ectrims, those are the things that I found really, really interesting. So, you know, there was things on aging and Ms. And treatments and bladder and bowel issues and, you know, health and well being things, and that's really what we see our area of operation, really. So that was something really important. Went to a fantastic thing about patient choice and shared decision making, which was great. And they referenced, which was really exciting, the Ms. Trust best decision tool that we have on our website to help people make choices about their treatments. And they kind of use it as an exemplar of one of the best ones in the world. That was obviously for me, a very proud moment, but I think it's true. I think I hear that people use it all the time and I'm sure lots of people watching this have used it, or if there's anybody who's been recently diagnosed or having to make choices about treatments, I'd encourage you to go and have a look at that. So, yeah, lots of interesting things. And for me, it's really important as a charity that we ensure that the research that's going on actually gets translated into the things that matter to people with Ms. So we will continue to provide the information that we do in our support through our helpline. And things like the decision making tool. But we also do our conference for the health professionals because we have a unique link with health professionals in training them at our foundation module and our conference where we bring that research back to. To people so they can take it back to their clinical practice for people living with Ms. And that's really important to us at the Ms. Trust.
- [63:08]
A
Yeah, it's really that kind of joining all the bits together that can sometimes kind of lack a little bit when you come to conferences like this, which is exciting topics and things. But then how do you actually get people with Ms. Worth it?
- [63:22]
C
Yeah.
- [63:22]
D
And that's something I really love about. We have our conference where we bring, you know, over 300 health professionals working in Ms. Together and there's a real buzz where they're all sharing ideas and it's not just the things on stage that they're hearing about. But I think that's very important. But the kind of sharing of good practice and I think everybody is encouraged to take something away from it that will make a difference to people with Ms. When they see them in clinic that week. And I think that's really important.
- [63:48]
A
And you mentioned that we've just changed our strategy, we're working hard on that and we are now moving into the world of research. And could you tell us a little bit more about it? How are you going to fit into this?
- [64:01]
D
Yeah, no, it's really, really exciting. I think, you know, for us, it's really important that we are doing research. We have an objective to power research into the things that matter for people with Ms. And to translate that into action. And I think, as I referenced through our conference and things like that, it's really important. It does get translated into action and it's really important we listen to people with Ms. About what matters to them in research. So I said that our purpose is around the everyday things with living with ms, so our research will be focused around that. So, you know, along the lines of some of the things I've been talking about before, we have always done some research, we've done our mapping report into the sort of state of services around the country in the NHS for people with Ms. And this year we're doing it slightly differently and we're also having a survey with people living with Ms. And we're going to put the two together and see how those two kind of stack up, really. And that's a really important piece of work and that gets shared far and wide and gets quoted all the time, and I think we can really shift the dial a bit in terms of the support that people with Ms. Get through talking about that. So we've always done things like that, say our listening survey where we talk to people and hear what matters to them and what they're struggling with and the challenges they're facing with Ms. We recently did our project with Motability where we looked into challenges around transition, sport and travel with Ms. So those things have already been happening since our merger. We've been funding a project around wearables and mobility with ms, which is really interesting. There'll be some findings coming out about that soon. And I think for us, the exciting thing that's coming is we're going to be doing our first ever annual open grant round where researchers can apply for funding. We'll be announcing that fairly soon, but it will be open in spring, so researchers will be able to apply for funding through that and it will really be for research in line with our purpose. So it's about those things, the day to day stuff that makes a difference to people living with Ms. So we will continue listening to people because that will make a real difference and feed into kind of the themes for our research as well. Very exciting time.
- [66:08]
A
Yeah, it really is. And I do love it because we do. We have big research for trying to find things like a cure or things like that that obviously needs to be happening, but we're still living it day to day and we still tend to see things that make change to our daily life. And I think that is so important.
- [66:25]
D
Yeah, absolutely. It feels really exciting and it's been really well received. People are really interested in it because as you say, there's some really exciting things going on at a global level about, you know, the remyelination or a cure or all those things that of course are really, really important. But in the meantime, what can we do to continue supporting people on a day to day basis? So our connections with the community and the health professionals will be really important.
- [66:51]
A
Very exciting time. So watch this space.
- [66:53]
D
Watch this space. More to come soon. We'll be announcing it all soon.
- [66:57]
A
Thank you so much and thank you for coming to chat with me.
- [67:01]
D
It's been lovely talking to you, Helena. Thank you very much.
- [67:04]
E
Thank you.
- [67:04]
A
If you'd like to support the future of Ms. Research, please do consider supporting Ms. Trust as we embark on practical research to support people with the daily challenges of life with Ms. A powerful way to do this is through a gift in your will. Please do consider this wonderful way of making a difference to the future of people living with Ms. You can really help us shape the support for healthcare, for expertise within our information and resources and really help us to build on the research program. If you have any questions, please feel free to reach out to me. My name is Erica and I'm the Legacies Manager here at Ms. Trust. You can contact me via email@legaciesstrust.org or have a look at our website mstrust.org UK gift in well, you've got plenty of resources, information and all my contact details on there. Thank you so much for considering a gift in your well, it's a wonderful way to make an impact on the future of Ms. So a big thank you to all our guests today, Brett, Claire, Natalie and Lucy. But before we go, just a quick reminder. If you have any Questions about the MSR free helpline is here for you. Call us on 0800-3238 Monday to Friday 10am to 4pm excluding excluding bank holidays. And if that's if you're calling out of hours, just leave a message and people will get back to you. You can also follow the Ms. Trust on social media. So we are on Facebook, YouTube, X Tik Tok and Instagram and you can see updates, videos and other useful content here. And this this podcast you can find on Spotify, Apple Podcasts and Amazon Music as well as on YouTube Music. And you can also find this podcast on YouTube. If you want to watch it as a video, please get in touch and let us know what you thought of this episode. Did you go to Egg Trims virtually or in person? Let us know what you thought and if you enjoyed this episode, please do think about leaving us a review. It really helps us reach more people. And until next time, take care and I'll see you next month.
- [69:35]
E
Bye.