S6E2 Overcoming MS Charity Updates with CEO Alex Holden

02:32 “Everybody needs respect, no matter what struggles they have, no matter what they’ve gone through. Understanding people’s situations are so individual to them, I think that’s shaped where I’ve gone with the rest of my career.”

03:42 “I’ve always been very interested in nutrition. At one point I did consider training as a nutritional therapist. So that’s something that I’m really passionate about: the importance of diet and how that contributes to your wellbeing rather than taking things out of your diet, how you look at what’s contributing to energy.”

06:42 “It is such a strong community and a very giving community. People who have had really quite devastating news are managing to give each other so many levels of support, tips, positivity and hope. To be part of that community and amongst those people who have that mindset, I feel very fortunate.

 

As an organisation, we’re really small. We are absolutely dependent on people who are in our Circles, our Ambassadors, and people fundraising for us. There are only twelve staff members, and most of us are part-time; the only way we can support a global community is through the community themselves.”

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Overcoming MS  00:00

Welcome to Living well with MS. This show comes to you from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life, through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own. Help others discover Living well with MS. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let’s meet our guest.

Geoff Allix  00:36

Welcome to the latest edition of Living well with MS. Joining me on this edition is a very special guest. And we have Alex Holden. Alex is the new CEO of Overcoming MS, having joined the role in March 2023. We’re going to get some insights into Alex, her background, what’s happening with Overcoming MS and where it might be going in the future. So thank you very much for joining us. And welcome to the podcast Alex.

Alex Holden  01:05

Thank you very much. Thank you for having me.

Geoff Allix  01:07

To start off with could you tell us a bit about your background, your expertise in the charity sector? And how did you become CEO of Overcoming MS?

Alex Holden  01:17

In terms of my background, I’ve spent the last 11 years at an ovarian cancer charity in the UK called Target Ovarian Cancer. And although yes, ovarian cancer is a very different condition to MS, there’s a surprising number of overlaps actually, in terms of particularly how we deal with the health sector and the importance of charities engaging with healthcare professionals, difficulties around diagnosis, difficulties around people getting the right support. So there’s an awful lot of transferable things that are coming that’s been really interesting actually learning more about them, how that impacts on people with MS. Previously to ovarian cancer, a whole mishmash of things from learning disability, financial services, I’ve worked at Bupa and I started out a long, long time ago, as a teenager actually, I worked several years all through school and university in a care home. And I suppose that’s particularly relevant, because I think that’s sort of developed the value base of really thinking about everybody needs respect, no matter what struggles they have, no matter what they’ve gone through, and just really understanding people’s situations are so individual to them. I think that’s really sort of shaped then where I’ve gone with the rest of my career, even though it was a vary long time ago, as I say.

Geoff Allix  01:19

The more I learn about it, the more autoimmune conditions have a lot of overlap between each other. It’s like, why is our body attacking itself? Maybe we had Epstein Barr Virus in the past, but essentially, it’s something that’s caused our bodies to do something.

Alex Holden  02:48

And the huge development of drugs and so that and the advances in research as well on how you can then use drugs to stop your body or to actually enhance how your body attacks itself in order to attack the disease condition as well. It’s really, really interesting. I think the repurposing of common drugs that’s going on at the moment is really fascinating as well.

Geoff Allix  03:08

Well, that. So I’ve had Lemtrada (Alemtuzumab), which is a repurposed cancer drug. So as someone who’s come from outside, what do you think? Is there a pillar there that you think actually, yeah, that that really resonates? And have you actually taken on board any of the pillars? Have you started to follow some of the OMS program?

Alex Holden  03:30

It’s hard not to get caught up in it when everybody’s talking about lifestyle all the time. So yeah, it’s hard not to start getting really into it. I think, I’ve always been very interested in nutrition. And I did at one point, really consider training as a nutritional therapist. So that’s something that I’m really passionate about, the importance of diet and how that contributes to your well being rather than taking things out of your diet, sort of how you look at what’s contributing to energy and things like that, I think it’s really interesting. Physical activity, I know I’m not as good as I should be. But I’m also a very busy person with two children. So I think there’s quite a lot of just sheer nervous energy and running around. In terms of, I’m not very good at stress management, which I know from having spoken to lots of people that that’s the one that lots of people struggle with. I have done a couple of Phil’s sessions on meditation to try and get better at that. But then there’s, you know, I like the fact that talking about stress management rather than just meditation.

Geoff Allix  04:34

You can have a mindful gardening session, you can have a mindful swim in a swimming pool. You can you can live life mindfully in many ways without sitting down and having a dedicated half an hour.

Alex Holden  04:46

I did. I went on a first time I do like swimming actually. You mentioned that, and I went to the first time on a swimming holiday this summer, which for those who are able and who are into swimming, I cannot recommend enough for both the physical aspects, but actually for the mental aspects as well of just swimming around different Greek islands each day, I never thought I’d be able to do. So I was so proud of myself. But also, you’re literally just sort of swimming for 3 to 5 kilometers and looking at the fish and looking at the coastline around you. So it was that was I came back feeling absolutely amazing physically and mentally from that. So yeah, that I suppose would fit a number of the different pillars

Geoff Allix  05:27

I did a lot of adventure sports. So surfing and rock climbing, things like that. If you’re rock climbing, you’re always in the moment,

Alex Holden  05:33

Swimming I came home feeling like Superwoman, rock climbing would scare me.

Geoff Allix  05:38

You definitely focus on what you’re doing. So there is now a huge Overcoming MS community. And there’s sort of organized parts of that with the Hub and so on. But what are your impressions of Overcoming MS as a community? And have you met many of the Overcoming MS members, are you actually getting to meet people?

Alex Holden  05:56

Yes and we’ve we’ve been really fortunate this year that we’ve been managing to run more face to face events, I’ve met a number of the ambassadors on different calls, and I’ve had calls from quite a few individuals The Overcoming MS community is just amazing, you know that, you’re a key member of it. And going back to your first question, that’s one of the main reasons that I really, really wanted the job, I kind of applied for the job, as one does you just sort of, you know, you read the job description. And then the more that I met people, and the more that I spoke to people, I just got really passionate about the people that I was starting to get to know through the various interviews that you go through and sort of the background research and reading people’s stories and seeing the chat that goes on on social media, I just felt I was getting more and more drawn into it. It is such a strong community and a very giving community I think is my impression of people who have had some really quite devastating news and are managing to give each other so many levels of support, and tips and positivity and hope and to be part of that community and that those sorts of people who have that mindset, I feel very, very fortunate. And as an organization, we’re really, really small. We are absolutely dependent on people like you, people who are in our circles, people who are our ambassadors, people going out there fundraising for us, every single thing. There’s only 12 staff members, and most of us are part time, but you know that the only way we can support a global community is through the community themselves.

Geoff Allix  07:32

I mean, I just think I did a skydive, it was brilliant. I mean, to be honest, people were people giving money to Overcoming MS. And I had a great time instead of rock climbing. So I’m into adventure sports and adrenaline stuff. So the fact that I got to jump out of a plane and Overcoming MS got a load of money. It’s brilliant. So there’s a lot you can do and and there was sort of an abseil off the Orbit.

Alex Holden  07:54

It did. I was just about to say we did our first abseil off the metal tower in the Queen Elizabeth Olympic Park in East London, which was for Linda Bloom’s birthday. So Linda and Tony Bloom. That was what she wanted for her to celebrate her 50th birthday. Linda absolutely loved it. Tony was terrified there think there was around 13 people who did it, it raised a huge amount of money. But again, the thing that was really interesting was I met Claire who’s ambassador for the Essex circle, who bothered to come up and watch the team abseiling because she really cared and she just wanted to be there to support them. And it was just so brilliant. I mean, how amazing is that, that somebody felt that they wanted to come and watch, you’ve got a crick in your neck from having to watch them coming down the tower, we will be doing one in 2024. So if people are interested, they can start getting in touch.

Geoff Allix  07:58

And a whole community in the hubs. I mean, the hub that I’m involved in, or the circle that I’m involved in, in the Southwest of England, people at the moment they have someone’s having trouble because they’re their father’s going into a care home and stuff. It’s nothing to do with MS. But it’s just such a supportive group. They’ve really sort of rallied around and they’re finding support and equally physical support. If people need it meeting up.

Alex Holden  09:12

It’s people who understand what you’re going through that you can rely on. I think that’s also the thing I’m really conscious of with MS as being different to a lot of other conditions is that when people are diagnosed, you know, you’re juggling that and your emotions are being diagnosed, you’re juggling with the physicality that caused you to be diagnosed in the first place. But also, it’s often at a time of life where you’ve got family, elderly parents, you’ve got career, you’ve got social life, all of these things that you’re trying to juggle and I think that’s one of the jobs of Overcoming MS is to help people be able to manage that juggle actually by finding ways to to get through it because it can, it’s not something I’ve experienced. My cousin has MS. That’s one of the reasons why I was interested in the job. And a very, very good friend has MS. So I have seen sort of what they’ve gone through. But yeah, it’s just trying to get through all of that clutter in people’s lives is so difficult. It’s hard enough at the best of times.

Geoff Allix  10:16

So if people sort of wanted to get to know you a bit more, what do you get up to outside work anyway?

Alex Holden  10:22

I have no time for hobbies and interests, I have two teenagers who are really busy. So my job outside of Overcoming MS is being a taxi driver of just driving them around to football matches, and all their various different clubs and social occasions and parties. And then I suppose I read quite a lot. So I’ll sort of do things around that. But at the moment, I’m quite conscious, it’s very kid focused, and work focused. And if I can squeeze some things in between, then I do. My children do like to get very involved in my work life. They like to know who I’m meeting, they like to join Zoom calls and Teams calls. So at some point, various members of the community will see two not so little ginger people wandering around in the background, and one of them came to the abseil when we went to watch that, so people will get to know them over time.

Geoff Allix  11:15

So now there seems to be more like pop up events. And are they going to continue, is that something that will carry on?

Alex Holden  11:23

Yes, so we’ve done four pop up events this year, which not everyone will have had the opportunity to experience. So we went to four places around the UK, just for a couple of hours, each time as a social opportunity for people to come to meet each other, and then have a couple of presentations from either people from that local Circle from the local area, or experts in elements of the Overcoming MS program. We’d like to do more of those and plan to within 2024. And obviously, you know at the moment, they’re UK based. And so we’re also looking at how we can deliver those either remotely using the Overcoming MS team, but also get to work much more closely with circles and with ambassadors to be able to deliver those types of events in other places in the UK as well, because I think that’s really important. We’ve delivered, oh, gosh, 2023 has been a return to so much stuff. So we were talking before we came on the podcast, we’ve just done our first retreat as well since before the pandemic, which was in November. And that’s absolutely brilliant to have brought 40 people together face to face to have experienced the retreat. And I think, yeah, we’ll definitely carry on doing that. But again, looking at how we can make that available to more people both from a cost point of view and a geography point of view. There’s more upfront digitally to take some of the content out and then the retreats themselves. And then two and a half days, or the one we’ve just done was a two and a half day to try and reduce cost and reduce the time pressures on people, which worked really well actually, because there was a series of sort of the more learning and content focused sessions came up front once a week, for four weeks in the run up to the retreat. So then the retreat could be more around the in person sharing, and getting to know each other, which I think was a real benefit.

Overcoming MS 13:20

Thank you for listening to Living Well with MS. This is our 150th episode. And we are so grateful to all of our listeners who are celebrating this milestone with us. Please leave a five star rating and short review on your favorite listening platform to help others discover the show and live well with MS. On to the next 150.

Geoff Allix  13:44

We had a forum, then we had Circles and Circles didn’t, there were a lot of teething troubles, no doubt. And then the big decision was made to change Circles and come up with a new system. I think they’re often referred to as Circles still as sort of the groups. But the system now is the Hub. So we now have the Live Well Hub. Can you tell us a bit about the Live Well Hub? And if people are interested, how do they go about accessing that?

Alex Holden  14:15

So the Live Well Hub, I’m really excited about the future of the Live Well Hub. Yes, I think we have to admit that Circles online, so the previous platform to try and engage to enable Circle members to chat to each other. I have not been on it but from what I gather from the team was technically not that great. Any technology in order for it to work has to be easy for people. And the joy of the Live Well Hub is that it’s not just bringing the Circles together. So there’s a section everyone can go in and post and people will either post nice thoughts about something that they’ve done that they’re particularly happy about because sometimes you need to share with somebody who understands where you’re coming from. If you go and tell your next door neighbor, they’re not that excited, if you’d share with someone who’s got a similar experience to you, whatever that might be, then then you’re gonna get a different reaction. And then there’s the Circles themselves. So there’s areas where the different Circles can come together and have a private area for their conversations. And then we can also do live stream. So we’ve been doing quite a number of those. Dr. Johnny White’s done several of them, where people can then come on and they’re more informal than a webinar, much more opportunity for questions and answers. And actually a really great way of people just being able to have a chat there and then, they’re recorded, so people can come back to them. So that’s a quite a good way of being able to access content in a much easier literally in your pocket kind of way, because it is an app that you can download from the App Store or the Play Store. But you can also access it on the desktop, or through the website as well. So you know, that sort of works for different people and different people’s needs. But I think it’s the potential that it has for again, bringing people together in different ways, you can come together with your Circle, but you can also form a great relationship with people who live at the other end of the country or in a completely different country.

Geoff Allix  16:15

And well, the other thing is, so I hadn’t noticed that before, actually. But so I’ve just been reclassified as Secondary Progressive. So there’s subject based groups as well. So there’s a progressive group. So it’s not just geographic. So there’s more than that. Because it may be that, yes, there’ll be one for that you live in Massachusetts, but there will be one because you’ve got progressive MS. And so you can join multiple circles.

Alex Holden  16:39

We’ve talked about some ones for different languages as well. Because again, that wouldn’t necessarily be geography, because you could have Spanish speaking people from all over the world, if there is enough of a demand and people who are sufficiently engaged to be in there and posting and bringing people together, again, with that back to where we are really dependent on our, on our volunteers and on our community, but we can provide the base, it’s then up to people to come up with some ideas and volunteer to be involved with it.

Geoff Allix  17:09

And I know something that’s happening more is that Overcoming MS is, is reaching out becoming involved with other organizations, and there’s been some sort of alliances on a few different things. And so you went to the ECTRIMS. Conference, the big European MS. It’s where all the neurologists go, it’s where all the research is talked about. Firstly, what was it? I mean, it’s something I’d be interested to go on yet, but what was it like? And what did you learn about the future of where MS treatments are going?

Alex Holden  17:43

So for people who don’t know, ECTRIMS is the European Congress for Treatment and Research in Multiple Sclerosis, and it was combined with ACTRIMS, which is the American Congress of excetera. It was fully international, there were people from everywhere, and anyone you’ve ever heard of within the world of MS. Mainly in terms of research and treatment. A lot of neurologists were there, a lot of nurses were there, the pharma companies were all there obviously having presence. It was just, it was amazing, because I got to meet a lot of people in person that I’ve either heard of new into role, you know, I haven’t necessarily had meetings with everybody yet. And also actually just being able to, you don’t necessarily need a half hour or an hour long team call with someone, you just need to five minutes just to say “Hi, I’m Alex, you know, really great to meet you.” If you’ve not been it’s really hard to explain them. 9000 people and some of those were joining digitally, but there was a huge number of people, every single day, there were possibly sort of nine columns of different events in different locations. So for each time slot of the day, you probably had eight or nine different sessions that you could attend, and you kind of choose the ones that you wanted to go to, that you thought would be the most interesting. But within each of those sessions, there might be four or five different presentations. And within all of those, you’re then trying to arrange to meet up with key people. We have a really close partnership with the University of Melbourne and there was the head of the  Neuroepidemiology Unit there was over and I really wanted to meet her because I’ve talked lots to her on on teams, but I wanted to meet her in person, but you kind of almost have to choose, do I go to a session or do I have a really important conversation, and do a lot of that really awful |walk with me” and you’re having a walking conversation. In terms of the main pieces of research coming out of it? The theme of the event was smoldering MS. There was lots about Epstein Barr there was lots around there was actually quite a lot of conversation about healthy lifestyle. And I’m going to dodge it entirely and say that there is a webinar with Brett Drummond, who’s talking through which I’m also on a I’m talking through the key outcomes from ECTRIM. So he kind of was going through the key pieces of research. But it was it was fascinating, utterly overwhelming, but really, really interesting.

Geoff Allix  20:09

And it is moving forward, there’s more to come. Because there’s been a lot in the last five years, but there’s, it’s carrying on.

Alex Holden  20:17

There’s volume in the speed of research. And actually, as with all research, in all diseases, there’s not enough investment, there’s not enough resources. But there is progress being made. People who’ve done research projects can present a poster at these types of conferences to demonstrate their results. And to sort of get people interested in either taking that research forward or thinking about how the results could be useful in their own work, there was over 1000 different posters being presented. And that really illustrates the volume of work going on. Now, some of those will be really early stage trials, but and deskspace research, but equally, a lot of that will be stuff that will genuinely go on to change people’s lives. I think it’s really interesting.

Geoff Allix  21:00

Where would you see Overcoming MS going in the future in the next five years? 10 years?

Alex Holden  21:06

I see. Well, it’s a well timed questions, we’ve just finalized our business plan for 2024 to 2026, which we’ve presented to the board, and they’re all very engaged and happy with that, we sort of got some key priorities of what we feel is really important. And then a lot of that is been influenced and driven by the community and the surveys that we do. So when we’re really annoying, and send out those emails saying, “please give us your thoughts.” We genuinely take the input from those and then help determine our plans for going forward from that. So I think reach is really important, particularly post pandemic, that balance that we’ve already talked about, about in person versus virtual, how we get to people, the harder to reach harder to listen to groups, different geographies, different languages, you know, there’s a lot of people out, we have a huge community, and it’s amazing, but there’s often a lot of people we’re missing. And the number of people who I speak to who, you know, didn’t come across Overcoming MS until much later, after their diagnosis. And that sort of, “oh, I wish I’d come across you three years ago.” So we really prioritize, and some work with healthcare professionals to engage with how we can get to people quicker, but also how we healthcare services, not just the NHS in the UK, but actually globally, healthcare services are in crisis. And we as an organization can actually help by taking some of the pressure off the nurses and the health care professionals themselves, I think that’s fine, here’s a whole load of resources for you. There’s that actually makes people’s jobs easier. So that’s a priority for us, I think getting more involved in treatment and research around healthy lifestyle and doing more and more to provide our community, the tools to be able to talk to people about why they’re following the program, the tools to be able to talk to healthcare professionals about why they’re following the program. And building on that evidence base, as I said, building more with our volunteers and our communities to be able to again, that’s the bit I suppose it leads to the reach, doesn’t it, but that’s the bit that helps us get to more people, because we are a small organization. And then we’ve invested in a fundraising team. And so doing more around our fundraising and our income, to give us that sustainability for our future. And to know that, you know, we know we’ve got certain levels of income coming in year and year, which makes it easier to plan, which is terribly boring and terribly basic. But if we don’t get those fundamentals in place, and get that fundraising right, we can’t be planning for two or three years ahead, because we don’t know what money we’re going to have for two or three years ahead. So sort of starting up, we’ve started doing some work around legacies and people leaving gifts in their will, which you know, is years in the future. But that’s what we need to be planning that far ahead in order to give us that security for the future and long term planning.

Geoff Allix  24:05

It’s always worthwhile, you know, if you feel Overcoming MS has given you a lot and I mean, I personally just say I wasn’t spending any money with Overcoming MS. But I’d got loads of resources from them and loads of support from them and that’s provided by charities so if it’s something doesn’t actually cost you any money, you can do it as a birthday present or as a an event and go and do something scary. And people will pay you money to your friends like so you do scary things.

Alex Holden  24:05

I’m keen on a tagline of overcoming your fears, because then that goes with Overcoming MS, I haven’t quite got the team onboard.

Geoff Allix  24:47

Overcoming your fears, and I actually didn’t do, gravity did the work for me when I jumped out of a plane. I didn’t really have much to do at all.

Alex Holden  24:56

But as you say you don’t actually, I think a lot of people don’t know we are a charity, you can go and buy George Jelinek’s book. And it’s amazing. And he’s amazing. What we do as a charity is then bring that to life and help people because not everyone can digest an entire book in that way. So it’s you know, things like the podcast, the webinars, all of that the majority of our content will remain open to everybody.

Geoff Allix  25:19

Yeah. Okay. Fantastic. Thank you very much for joining us.

Alex Holden  25:24

Thank you so much for speaking to me and a massive thank you to you, Geoff, for all the work you’ve been doing for years on the podcast because it’s absolutely amazing. And I know the number of people listening to it is huge. So a huge enormous thank you from all of us at Overcoming MS too.

Geoff Allix  25:39

Thank you. Thanks very much.

Overcoming MS  25:41

Thank you for listening to this episode of Living well with MS. Please check out this episode’s show notes at overcoming ms.org/podcast, you’ll find useful links and bonus information there. Don’t forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Claire and Nev Dean, our host is Geoff Allix. Our videos are edited by Lorna Greenwood, and I’m the producer Regina Beech. Have questions or ideas to share? Email us at [email protected] We’d love to hear from you. The Living well with MS podcast is for private non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice, for medical advice please contact your doctor or other licensed health care professional.