S2E19 Welcoming Grazina Berry, new Overcoming MS CEO

Geoff Allix  00:00 

Hi everyone, Geoff Allix here, your host of the Living Well with MS podcast. To all our listeners I hope you and your families are staying safe and healthy during this COVID 19 crisis. While social distancing and other restrictions may seem like a drag, in the long run, it will prove critical to stemming the tide of this epidemic and returning to a sense of normality. I have faith will come out of this stronger, smarter and a bit more enlightened as a result. In the meantime, we at Overcoming MS and the whole team behind this podcast are here for you to keep you informed and help you keep on track with your personal journey to a healthier you, now on with the show. For this episode of the OMS Living Well with MS podcast, I’m joined by Grazina Berry. Grazina has recently taken the role of CEO at OMS and so it will be fascinating to hear her insights about Overcoming MS. Welcome, Grazina. 

 
 Grazina Berry  00:56 

Thank you, Geoff, I’m really pleased to be here. 

  

Geoff Allix  00:58 

To start off with, could you tell our audience and the OMS community a bit about yourself personally, so that we can get to know the person behind the Chief Executive of the OMS charity. 

  

Grazina Berry  01:09 

Sure. I’m Grazina Berry, and I live in Cambridgeshire, England, UK, with my husband, two boys; 10 and 15 years old, and a beautiful four legged companion Coco. I enjoy running, baking and keeping on top of current affairs. I’ve lived in the UK for just over 20 years, having arrived from Lithuania, where I spent my childhood teens and early adulthood. It was a fascinating time growing up and witnessing the breakup of the Soviet Union in the late ’80s. Going from Communism to Independence, in what felt like a flash. As a student at Vilnius University, I was fortunate to have the opportunity to travel, work and study in Sweden and Finland. So when a further opportunity arose to explore the UK upon graduation, I jumped on it. The rest is history. Here I am. 

 
 Geoff Allix  02:08 

So you could still, were you still traveling before the breakdown of the Soviet Union, you were allowed to travel then? 

 
 Grazina Berry  02:17 

Not so much. It was pretty restrictive actually. Very little travel was allowed, we could go to some of the satellite states like Belarus. We could sometimes go to Poland, but not very much further afield. It was pretty restrictive, actually. So we were quite closed in actually it feels like now, because I suppose living here in the UK and seeing people being able to travel quite freely, especially before the pandemic, I would look back on my days during the Soviet times and think crikey, we had so few opportunities, and yet, we didn’t really feel like we were lacking. If you see what I mean, we just enjoyed what we had. 

 
 Geoff Allix  03:02 

Yeah, It must be fascinating time. You’ve held senior leadership roles at other charities, most recently as CEO of the Aplastic Anemia Trust. What are some of the challenges that you’ve encountered taking the lead of an organisation like OMS? 

 
 Grazina Berry  03:22 

That’s right. I’m deeply passionate about the not for profit sector and the immense value it brings to our society through it’s capability to reach and support people at grassroots. So I spent a number of years at Richmond Fellowship; a large mental health focused organisation, which then grew into the recovery focus group. There I was responsible for the quality of a wide range of services provided to people with mental ill health, innovation, organisational excellence, and really importantly, the bit closest to my heart, the working together or a so called co-production agenda. Immediately prior to joining OMS, I led the Aplastic Anemia Trust through quite a significant transformation. A more yet, really vibrant and quite punchy, rare disease focus charity, the only one in the UK in aplastic anemia. It’s all about community support, advocacy and research to help rid the world of the life threatening illness. I was drawn to OMS for a couple of reasons really. Firstly, due to personal pull, a close member of the family has MS and secondly, because of his immense potential to change the lives of many. I was looking for a new challenge at the time and I thought wow, this is it. In terms of challenges, I think one of the main challenges if not the main challenge of running an organisation like OMS with its global ambition is its global reach. Just to give you a sense of scale, Geoff, our recent refresh with OMS webinar series enjoyed a global audience of 57 different countries, including my native Lithuania. That’s an incredible challenge from a practical point of view of delivering an interactive webinar series across multiple time zones and the huge credit to the team for pulling it off. But what we realise is that there is no one size fits all solution if we are truly community, let alone global community led. Another challenge that we face is, of course, the different health systems across different countries with varying appetite to prescribe a lifestyle change at the point of MS diagnosis. Interestingly, the UK Government is launching a strategy, focus on people’s weight, which of course is all about lifestyle. So there is hope yet, let’s just hope that strategy does go deep enough. 

 
 Geoff Allix  06:06 

Absolutely. And what’s your personal philosophy on the place charity like OMS should have in the community it serves, and and what does it offer to people who have MS? 

  

Grazina Berry  06:18 

My personal philosophy stems from my values base at the center of which is a strong sense of justice and equality and that everyone should have the opportunity to access the best quality care support information, to enable them to make choices about their treatment, and what that looks like. So the role of OMS in the communities we serve, in my mind is primarily to listen to the needs of the communities and respond in the best way that we can, so that everything we do in championing the seven step recovery program is community led. This then shapes the role of OMS as an enabler for people with MS to make positive life changes, which in turn improves their quality of life preventing relapses and disease progression. I think we have a lot to offer. First of all, we offer people with MS, a very viable, I think pathway to better health and quality of life, through the seven step program that is both realistic and sustainable. We don’t say to people, “there is no cure,” we say to people with MS that there is hope of living well. And I think our approaches is viable for a large number of reasons. We focus on both factors that influence living with MS and disease progression and that are within our control, namely, our lifestyle, the food we eat, the exercise we take, the amount of time we spend outdoors, how we manage day to day stress, our mental well being and so on. When we combine these factors, along with disease modifying medication that doctors may prescribe, we believe because of a substantial body of evidence that the positive impact on an individual’s life can be truly profound. We recognise that making these life changing steps isn’t always easy, of course and so our focus on community, through our circles program is essential, because it helps people stay connected, build new connections, support each other as they adopt the program and address their lifestyle. Through our focus on prevention, we essentially offer hope for future generations. 

  

Geoff Allix  08:42 

Fantastic, and what are some of the challenges in your new role at OMS in terms of continuing the work it does, but also charting a new direction for the future? 

 
 Grazina Berry  08:56 

The global reach that I mentioned is actually one of the core challenges that we face. But I think we really don’t have to look very far to almost touch some of the challenges that we’ve got. At the moment because of the pandemic there will be people within the community that we serve who will be shielding, who may be unsure about a return to a working life or to any sort of normality that they are used to. It’s really challenging actually in the fundraising environment for all the charities at the moment. Lots of press at the moment about redundancies being made, charities becoming quite a lot smaller and leaner. You know, it’s not an easy environment. However, by working with people, engaging with them at the grassroots, we can really get closer to what some of those day to day problems and challenges are and work with them to begin to address them. 

  

Geoff Allix  10:05 

And what do you think are some of the opportunities that there might be that you could embrace and explore In your early days at OMS? 

 
 Grazina Berry  10:16 

Yes, it really is actually, early days, I have to say, this is my week four, and which was quite usual, I suppose, in those very early days, it’s all about getting to know the people behind the organisation, behind the brand and by the people, I mean, the team, the trustees, and of course, the community. So this is my week four and what I’m doing this week is, I’m speaking with a number of our community members, ambassadors from around the globe, who are holding together our community circles so I can get closer to their viewpoints and their expectations. This is really important because the community we serve is not homogenous, the geographies we are already reaching are hugely diverse, as are the different cultures we’re interacting with and so a key opportunity is to get closer to our diverse communities to get a better understanding of what they expect from us and the OMS program. Digital, of course, presents another wonderful opportunity to reach more people and have a much wider impact. We’ve already established a fantastic platform; our website, which is full of dynamic content, inspiring blogs, written by people who are following the OMS program, access to engaging podcasts, and informative webinars, lots of very practical information about each of the seven programs and we need to build on this and refine it further. I’m also in these early days, building collections and having conversations with the leaders of other MS focused organisations, so that perhaps we can think of ways to tackling shared challenges or agreeing what those shared challenges are, and to ensure that OMS has a seat and a voice at that table. 

  

Geoff Allix  12:14 

Yeah, I’ve often thought that we at OMS it’s not a competition with other OMS charities, I think the end goal is the same, that maybe the methods might be different at different charities, but everyone wants to achieve the same end. 

  

Grazina Berry  12:31 

That’s right and of course, you know, we will be able to get to that same end in different ways. We’ve got such a diverse sector and actually, that’s the beauty of it. That, you know, there is something for everyone in every disease area. It’s vibrant, it’s progressive, it’s hugely supportive, and hugely innovative. And certainly in the world of MS our focus is, of course, on the quality of life. We do want to influence that through the OMS program. There’ll be charities that are focused on research, on lobbying and influencing policy change and I think sitting down together and having a dialogue about what makes the greatest difference to the lives of people affected MS is a good starting point. Because we’ll all be good at what we do in our areas of work, so the only way forward is really by collaborating towards, you know, the joint vision, the joint future of a life, a better life with MS. And ultimately, of course, getting to that position of a cure in a way to an environment where perhaps there will be no more organisations focused on MS because the disease won’t be there. But that is quite quite a long term vision, I would say. 

 
 Geoff Allix  13:59 

And if you were to look ahead, where would you like to see OMS in a few years time, discounting the non existence because we have a cure? 

  

Grazina Berry  14:11 

I would really like us to be recognised widely as the world’s leading MS lifestyle change charity. I would like to see us and our community as vocal advocates for and influencers of change that is needed to embed a lifestyle change in disease prevention. 

  

Geoff Allix  14:33 

And is there a big difference in running a charity that’s in the MS space against some of the other areas that you’ve worked in before? 

  

Grazina Berry  14:42 

Good question, actually, yes and no. Certainly not massive differences. The disease focal areas are different, but when you look more closely, you will see that there is that inseparable and powerful mind-body connection in almost any disease area. Community leadership and person centric approaches have been at the core of every organisation I’ve worked for. There is certainly a thread there that can be traced back to our earlier conversation about values, and philosophy and the complexity of the operating environment has now almost levelled out the field across the sector, we are all in a tight spot. So I think, you know, that collaborative working will be really important and will be quite a strong joining force, I think, across the sector. 

  

Geoff Allix  15:38 

And what would you be most excited about in your new role as OMS CEO? 

 
 Grazina Berry  15:44 

Oh, Geoff, there’s lots and lots to be excited about. Probably most excited about getting close to our communities, really energising them and seeing what we can achieve together, as we champion the OMS program, enable greater access to it and make a real difference to more people with MS. 

 
 

Geoff Allix  16:07 

And finally, on a totally different note, could you share something from your life that happened to you that left you thinking, wow, we live in an amazing world? 

 
 Grazina Berry  16:17 

Yeah, I have to say, I’m not that easily wowed by this spectacular. But I’m inspired by sometimes the simplest acts of human kindness, that we show each other. And sometimes when we least expected it, and the best example of this is how our communities have rallied together in the pandemic, in the small Cambridgeshire village where we live, we have helped each other with meds, food, simple, everyday tasks, just to get through the worst of it. And I found that truly amazing and humbling. We actually lost a loved one to COVID, during the pandemic, and seeing the lengths to which doctors and nurses went to support my mother in law, was incredible. And I think that’s just one of those things that makes you really think we’ve got an amazing NHS, we’ve got amazing people who made the NHS, what it is and that is truly fantastic. We are fortunate, and that really helps us to deal with some of the most challenging and difficult moments. 

  

Geoff Allix  17:34 

I think it’s really the pandemic has shown people it’s highlighted them in different lights, and some people that I didn’t necessarily expect, but like famous people, and you think wow, they really have shown this that really good nature to them about themselves. And then actually others have not. And and you think actually they’re not there for everyone else, they’re very much there for making money. And some people you thought were much kinder, less kind, and some people you didn’t necessarily think had that great nature, it’s really shone a light on people’s true character. I think in many ways.  

  

Grazina Berry  18:17 

I think you’re right and we frequently say it’s the times of crisis that bring out the worst and the best in people. And, of course, we’ll witness both of those elements and I suppose, you know, people will have both good and bad in them. But I suppose is the balance that’s there’s got to be right. But yes, you are absolutely right, Geoff, there are plenty of examples of fantastic deeds that aren’t necessarily, you know, huge in terms of scale, but just, you know, those really nice acts of kindness that are shown to people in the local community that is brilliant. And, of course, there’ll be quite a lot of selfishness. I think we saw quite a lot of that in the early days of the pandemic, when some of our care workers frontline care workers struggled to get the essentials, because everything was cleared out, as if we were expecting this huge, I don’t know, apocalypse, but then you know, bit by bit things settled, thank goodness. And I suppose, you know, it’s been a tough time for everyone, it’s taken time to adjust and get used to what is now a new norm, which is still a very strange world, I have to say. 

  

Geoff Allix  19:40 

Yeah and well, with that, Thank you very much for joining us, and I shall try to pronounce your name correctly this time. Grazina Berry, thank you very much for joining us at The Living Well with MS podcast. 

 
 Grazina Berry  19:54 

Thank you very much, Geoff, It’s been a pleasure. 

  

Geoff Allix  19:56 

Thank you. With that, I would like to thank you all for listening to this episode of Living Well with MS. Remember that there is a wealth of information at overcomingms.org, including show notes, and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips, connect with other OMSers in your local area through our OMS circles program, and learn about the latest research going on in the MS world generally, and related to OMS specifically. I encourage you to register on the site and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode and please feel free to share it with others who might find it a value. Let us know what you think about the podcast by leaving a review and if you have ideas for future episodes, we’d love to hear from you. So please contact us via our website overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and Living Well with Multiple Sclerosis. I’m Geoff Allix and I’ll see you next time