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News — In July 2021, the ILAE communications officer sat down with outgoing President Samuel Wiebe and President-Elect J. Helen Cross.

Dr. Wiebe faced the effects of a pandemic for the last 18 months of his presidency, and Dr. Cross is taking office as the first female president of ILAE.

They discussed:

•        Their paths to the ILAE presidency
•        How they became interested in epileptology
•        How the pandemic affected ILAE
•        What it means to be a good leader
•        Their visions for ILAE going forward
•        What they might have pursued as a career, other than epileptology

Video transcript

Paths to the Presidency: Chance and Circumstance

ILAE: I want to talk a little bit about how you became involved with the ILAE and how you came to want to seek the presidency.

Dr. Wiebe: Sure. “Seek” is an interesting word (laughs). You know I was reflecting on this before because I hadn’t really thought about this. Young people, some of the [Young Epilepsy Section] people have asked me, “How do you become president of the ILAE?” And I don’t know… it just kind of happens, right? But your question prompted me to look at how did I get into it.

I started back in 2000, I don’t know, maybe even the 1990s, serving in some leadership positions in [the American Epilepsy Society], the Epilepsy Foundation, which used to be the Epilepsy Foundation of America, leading some groups and task forces at the NIH and NINDS, the CDC, then president of the Canadian League Against Epilepsy – this is all before 2005.

After 2005, I was invited to chair what was then the North American Commission and is now ILAE-North America. From then on, my involvement with national or large international organizations has been almost purely with the International League. I was commission chair, and after that I started getting into the more political arena, you would say – because these are all elected positions, so the moment there’s an election it’s political – I ran for Secretary General (of ILAE). Nico Moshe invited me, and then I ran for Treasurer, and then President.

Was there a conscious decision at the beginning, “I’m going to get involved with the ILAE so I can become president?” Not for a moment, never. I think it’s very clear when you decide you’re going to run that you want to be president, but even when I was treasurer, which was the last position I held before president, I was considering whether I should or not. It was not planned.

There are many ways of doing things – there are people who have their eyes set on this and they work like crazy until they get to that goal – it wasn’t like that for me, but that’s probably because that’s the way I operate.

Dr. Cross: It’s very much the same for me. I never came into the ILAE with the ultimate view of becoming president. I came into the ILAE because I initially chaired the Commission for Pediatric Epilepsy Surgery – or rather, it was a subcommission, actually. I had the audacity to suggest it might become a commission, and then very quickly learned that’s not the way you did things at the ILAE at the time! But then I was brought in, having been on the Commission for Pediatrics.

I had a lot of encouragement along the way, not least from Emilio Perucca and Nico Moshe, who brought me in to be the chair of the Global Outreach Task Force, which was trying to define the difference between a global campaign and other things at the time, and then ultimately there was a suggestion that I run for Secretary General, which is part of the Management Committee.

At that time, as people know, no woman had actually succeeded in getting onto the Management Committee. I’ve never done anything because I’m different; I do it because I think I can make a difference and I enjoy what I’m doing. So I ran, and I was the first woman to be elected to the management committee as Secretary General, I was re-elected, and then I became Treasurer.

And yes, you go through that decision ultimately of thinking I plan to run for the presidency, but then you go through the phase of thinking, is this what I should really do? Not least because you want to do it well, and you want to be able to do it in line with everything else you do -- because this is an extra thing on top of everything else from your day job. And then I made the decision that yes, I would run. And that’s not because I’m the first woman president in the over 100 years of ILAE history, it’s because I got to the stage where I felt I could make a difference, that I would like to continue to be involved in the leadership, and I enjoy working with the people I do – it’s a real privilege.

I never set out on my ILAE journey with the view to becoming “The President.” It’s something that evolves over time. I wouldn’t want to do it if I didn’t feel I could contribute in a major way to the way we work as an international organization.

Dr. Wiebe: Presidential accomplishments

Dr. Wiebe: I think that there were clear goals, they had to be sort of generically stipulated at the beginning of the term, what you want to achieve, and I think you can do that with moderate certainty only, because you don’t know which direction things are going to go. Take the pandemic for example – it’s an extreme, but there are many things like that, right. You don’t know what the dynamic is going to be among your Executive Committee, your Management Committee, the new people on board, but there were clear goals.

For example, restructuring the ILAE was one, and it has been restructured substantially, with the creation of councils. The creation of the ILAE Executive Board, in the sense that it’s a regional board as opposed to being a chair of a commission – I think the involvement of the Regional Board is much stronger and closer than it has been for a long time, not because people didn’t want that or didn’t want to try, but I think a combination of suggestions and ideas were brought to the table and put in place and it just worked. It is working and it’s a work in progress, I’m not saying that we’re there. I don’t know if you would agree, Helen, but I think this is a great step forward.

The second one is of course the Executive Director, and that is something the ILAE contemplated for so many years and now it’s in place and it’s incredible, so I think that’s a great thing.

Acquiring the Secretariat and having our own congress office, which is now more than just a congress office – it is the Secretariat and it’s the administrative body for a lot of activities and formalization of those things. I think the current Executive Committee should be very happy with those achievements.

Something additionally important is the advocacy aspects with the WHO. People who are working – they just work tirelessly at this – Alla [Guekht] and people preceding Alla, Emilio [Perucca] before her – we wouldn’t be there at all without them. Those things are coming to fruition.

Then, education and the [ILAE] Academy. This, I must say, was something I’ve always wanted to do and had a bit of a dream of doing, where you create this virtual academy that is the ILAE and then incorporate and make it richer, incorporating various aspects. I think this is coming along – it’s a lot of work, creating curricula, formalizing things, and I think we’re ahead of the game of many other organizations in that regard. These are really, really, good things.

You asked me if I was surprised by anything – well, the pandemic is certainly surprising, right, there’s no way to put that differently! But I’ve been surprised by people, not because I didn’t expect people to do so much so well, but because it just went beyond expectations and it is beyond expectation. I’m surprised every day at the ability of people, the willingness of people, to give and perform on a voluntary basis. Nobody’s paid, it’s all volunteer, on their own time, and it’s the top professionals in the world. It’s unbelievable. Like Helen said – the group of people with whom we work -- it is a real privilege.

Tragedy and resilience: Learnings from the pandemic

Dr. Wiebe: I must say that I had no idea how the pandemic was going to play out or how severe or intense it was going to be. I have a friend who produces antiseptic products at his company, and he was asked if he could change to something to disinfect for COVID-19. He called me and asked how long I thought this was going to last – this was about 6 weeks into it. And I said, because I heard a CDC person say this, that these things usually go away in 4 to 6 months. Look at SARS; that’s how long it lasted, we had it in Toronto, it lasted about that long. I said I wouldn’t advise you to get into this if that’s what you’re asking me because it’s going to be gone in 4 to 6 months. And lo and behold...

I distinctly remember the last time I got into a plane, and then off the plane, because the place I was going was now locked down because of COVID. And that was February of 2020 [17 months before this interview]. So we had no idea what we were getting into.

In spite of all the bad and terrible things we have lived through—we’ve lost dear colleagues to this condition, we’ve lost friends, we’ve seen people in distress, and we’ve seen how the world has been terribly affected and the world has been closed—I think there are a lot of good things I took from this pandemic. We’ve talked a lot about resilience and how people on the ground, colleagues, health workers, have taught us about self-sacrificing and giving, resilience, and patience. And people with epilepsy—their focus has been positive, even when you look at it formally in research, they’ve adopted resilient attitudes.

We’ve also learned about flexibility. I never imagined we could do a year and a half of executive meetings and initiatives and completing things virtually. It’s amazing. We’re flexible beings and we adapt and that’s fantastic for me to see. See our colleagues stepping up to the plate. We’re all so fed up with virtual, we hope it’ll end, but it has taught us a lot.

And then, shifting priorities in order to be able to function in this manner, being alert and attentive to the needs of people, what can and cannot be done. Attention has become really important, because when you’re not seeing people face to face, you need to be attentive to many things. To the needs of people with epilepsy, to the changing research arena and the way things are being done, to the way people are making decisions and where resources are being devoted, and the needs of the organization and people with epilepsy, all of those things have shifted.

Presidential Plans

Dr. Cross:We’ve been in a real period of change, not least with the way we work but with the pandemic, we had to adjust and adapt to different ways of working. And there’s no doubt that when I put myself forward for the presidency, key goals were to maintain and sustain and evolve the education that we do—t’s not something that fits in one term and then we stop, that has to be sustained.

Another issue was to listen to those at ground level—not only being top-down, but also bottom-up. So our chapters—we have 123, soon to be 128—it’s an ever-increasing base of membership that we need to listen to and know how we can work through the regions down to the chapter level.

We also need to evolve with regards to our congresses, and looking at how we generate income even, look at our publications and the way that moves forward. Nothing stands still; we have to constantly evolve with the times.

What the pandemic has done has really made us think about the way we work. None of us wants to stay virtual forever; we are social human beings and there’s a lot of interaction that’s so beneficial from a face-to-face and spontaneous point of view. But what the virtual world has done has introduced different ways of working, which has actually allowed us to reach out more, in all honesty. We can’t travel anywhere, but using virtual and face-to-face we can get to as many things as we can, we can work as teams as much as possible, we can probably get a lot more done.

So I think the pandemic on the one hand was of course a huge shock; we all had to adapt. There were areas where there was a real, “suffering” is the wrong word, but a problem arose because, for example, research could not carry on. But now as we move out, there are certain aspects of it—the ways of working—that we should move forward with, as well as looking at the way we deliver our education and our congresses in a way so that we can move toward face to face but also utilize the virtual world.

The First Female President

Dr. Cross: There’s no doubt I’m very proud to be the first woman president, and I’ve been the first woman president of other things. It’s something that’s not really…I’ve not seen myself as really different. I’m doing the same job and have similar aspirations as people of the opposite sex, I just happen to be wearing a dress, rather than anything else. But there are certain aspects. And it may depend on where you are in the world as well as what you do.

I’ve never really let any bias affect me, in that I will give as much as I get, and if I believe in something, that is what I’ll pursue. If there is some degree of confrontation, then I tend to try to go around it and try to think about why someone is thinking a different way than me. But I know it is different culturally in different parts of the world, and I have experienced that, and I hope we’ve moved a long way from 10, 15, even 20 years ago, but there are still some areas where there do appear to be different perspectives on what females should do or where they should get to. There also are different perspectives on what responsibilities individuals have, outside of what they do with the league or in their day job.

I’ve been very lucky in that I’ve been supported by a partner who has firmly believed in what I do. And my daughters, I don’t think they were deprived growing up—they joke that I was never there, but I don’t actually think that was true. But they are also very proud of what I’ve done, and I hope I’ve instilled in them that they should do whatever they want to, and I don’t expect the same of them as what I’ve done.

I was the first woman to be elected to the Management Committee, and already we have 50% if not more females there over the past four years. It’s already opened up. We’ve worked very hard to get gender and geographical balance right across all the committees we have, and there are far more people stepping up who want to do it. I think it happens by example, yes, but also by encouragement, trying not to overload individuals, trying to get them to step up into what they’re interested in and want to do, and then giving general support.

I’m not going to be the last. There are going to be other women in the future and it’s going to be a much more balanced outlook moving forward.

Role Models and Leadership Styles

ILAE: I’m curious if you have a philosophy of leadership or if you have role models that have helped you develop your leadership style over the years, or maybe not. But if so, I’d love to hear about that.

Dr. Cross: I mean I reflected on this, and it’s never struck me that I’ve had one role model. I have had many role models, no doubt about it, locally, nationally, and internationally. People I’ve looked up to who have really taught me a lot, mainly about epilepsy.

The way I look at it is that I look at different leaders and I try and pick out the good points; if they’ve done something well, I look at how they’ve done it and try to incorporate that into the way I work. So I don’t think there’s one role model that I’ve developed my leadership style on, and I question if my leadership style is the same as anyone else’s.

I have a very...you know, I’ve never thought of the way I lead, though I do it in a very specific way. I want to interact with as many people as possible but then try and come to a decision about paths we should go down. I also hope that I can be approached in a way that maybe some leaders may not be able to be. But that sort of style—I haven’t gone down one model or another or thought of one person.

I have a great deal of admiration for a variety of people who’ve helped me along the way, not least locally with Brian Neville, and from an international perspective, many different presidents of the European Paediatric Neurology Society (EPNS) as well as past presidents of the ILAE who have helped along the way. You take various aspects of their leadership style that you admire, and you try to emulate that. I’m not sure I succeeded at every single point, but that’s the way I see moving forward with leadership.

Dr. Wiebe: I think I’m very similar to Helen. When I was asked this, I was like, “Oh my gosh, I don’t have a role model! Maybe there’s something wrong!”

Dr. Cross: I worried. I did worry that I hadn’t got one.

Dr. Wiebe: So I did what Helen did—I reflected. Thank you for asking these questions because it made me reflect a lot. I thought to myself well, it starts early in your life, very early. Who did I learn things that I value, like hard work, good work, excellent work, giving the best you can? And that’s at home. And then as you go along, you have these early teachers in your life. I remember dear teachers that motivated me and said you can do this; you can do that. This idea of believing in people was instilled early on by people who believed in me.

And then as you go on, you learn things from people—my trajectory is very much like Helen’s—you learn things from people, and you admire different things. The same person may have an outstanding quality that you want to emulate, and others that you don’t. That’s how you develop. To me it’s a work in progress. Trying to improve, get better, incorporating new things and not do things that are not conducive. Listening, being inclusive, believing in people, having an ideal or an idea, and really working on it, believing in it and bringing people on board, those things I learned from others.

Now if you look at big figures that I really admire, don’t I wish I had some of the qualities that Abraham Lincoln had—the ability to think so clearly under adversity and lead people. Or Churchill, for example, or some of the deep internal values in the midst of adversity, like Marcus Aurelius. But those are aspirational. The day-to-day things you learn early.

The point I want to make is, this is why it’s so important to bring people on board early. They need to be exposed to a variety of leadership tyles and activities and roles that they can pick the good from, emulate what is positive, and develop, and I think that starts very early. I think it’s very important that the League does this early on, and what Helen and I have been doing with the Young Epilepsy Section group and the next generation and all of that, I think that’s a good thing.

The Power of the Next Generation

Dr. Wiebe: One thing I could say and I think Helen, you would agree. When we started with the idea of the next generation, the leadership and training were there but other things, the mentoring, the creation of a section, I was truly surprised to see how effective it was, how quickly it took off. Those people got organized in no time, they are efficient, they’re quick, that was really a wonderful surprise to me to see that working so well, so early.

It’s really a wonderful example of how number 1, engaging young people is important and what it can do, and number 2, how sections in other areas could also work. I think you would agree with me Helen, that this was a refreshing surprise.

Dr. Cross: Absolutely, and they did get themselves organized very effectively. And to see how they’ve all embraced it and the ever-increasing number of participants within the Young Epilepsy Section, and they’re very keen to participate in whatever we’ve asked them to do, and they contribute hugely. It’s been fantastic.

Family Support

Dr. Wiebe: I wanted to say something though that I think Helen and I both share, and I should have mentioned it earlier, I had every intention, and that is our families.

Dr. Cross: Yes.

Dr. Wiebe: Wow. I mean, neither you nor I, if I may say that for both of us, would be doing this if we did not have such incredibly supportive families. Understanding children, but especially supportive spouses. Anna has been my rock. This is a very demanding job, in case anyone was wondering. It is a very demanding job, and without a spouse that is really supporting you, not behind you but right next to you, all along, it becomes very difficult. So I just want to express my gratitude and my deep appreciation for Anna and indirectly for our spouses.

Dr. Cross: I absolutely agree, and I mentioned earlier when I was talking about the challenges for women—I couldn’t have done anything I do without Graham’s support. He’s been with me since entering into medical school, he’s lived through the difficult hours, he’s been absolutely supportive of everything I’ve wanted to do. I couldn’t have done anything without having that rock, that home, by my side. And my daughters—I’ve got three daughters, just like you, Sam, who have been really supportive and tolerant of the nonconventionality of their mother. The family is really important—it’s important to me, it’s important to you, and if they weren’t so supportive it would not be possible.

Why Epileptology

Dr. Wiebe: First of all, I was always interested in neurology, and I think you have that neurology bug from the time you’re a medical student—that’s how it was with me anyway. I was interested in the nervous system, especially the central nervous system and cortical function. And then epilepsy I found fascinating because it is the most appropriate window into the brain and how it functions and malfunctions. It really gives you an idea of how the human brain behaves and all it does, but not only that, we also have ways of investigating that, with EEG, imaging, and advanced imaging and direct readings from the cortex, and we have ways of intervening. You have medication, non-pharmacological interventions, electrical stimulation, surgery. It really is a vast field.

And one thing I didn’t know at the time that I was getting interested in epilepsy, but which is very clear now, is that epilepsy is not epilepsy, it is the epilepsies—there are many diseases in one package whose common denominator is seizure recurrence. There are so many variables in these conditions at all ages.

Dr. Cross:I was one of those nauseating children that even before medical school wanted to do pediatrics—I wanted to work with children. But also, during the course of medical school, I fell in love with neurology. Not least because the brain and spinal cord are fascinating to me, how everything functions in a coherent way, and also to the other extreme, how little we knew about it. We didn’t have lots of the imaging that we have now. We had EEG, but none of the metabolic testing or genetic testing. It was a long time ago.

To me, pediatrics and neurology, putting them together, neurodevelopment, how it could be impacted, and all the diseases that were clinically described but actually about which we knew very little at the time—there seemed to be this impending feeling that we were beginning to understand more about it. And sure enough, over the last 30 years, the doors opened up to neurological disease. Through imaging, neurophysiology, all the aspects, the genetic and metabolic testing.

And then the way I got into pediatric neurology was that we train in pediatrics in the UK and back then, there were only two places you could train—it’s very different now—and I came to Great Ormond Street Hospital, where I was fortunate enough to fall under my mentor at the time, Brian Neville (1939-2016). We had the first clinical MRI scanner for children and we were using it to look at epilepsy, and that opened the door to epilepsy surgery. So I had the possibility to work with children and we had the ability to cure, which happened rarely in child neurology.

So epilepsy surgery was my way into epilepsy, because as Sam has already alluded to, it became clear that epilepsy that is surgically treatable was one type, but there were a whole range of other types of epilepsy that led on different causes, and that provided continuous fascination of what can we find that’s new and how can we move forward. And that was also my way into the ILAE because finding people with the like-mindedness of epilepsy surgery for children, moving that forward, and then finding other avenues for which we could move forward internationally, that was how I found my way into the International League.

Alternate Career Paths

ILAE: If you were not an epileptologist, what do you think you would be doing instead?

Dr. Wiebe: I can start.  I need to say very honestly that many things interested me. It wasn’t as though I said the only thing I want to do in life is epilepsy or even neurology, though I was always interested in it.

If it weren’t epilepsy, I would probably be working in some area related to cognitive issues, or development, or immunity—those things interest me a lot. And epilepsy has a lot of that of course; it is part and parcel of the epilepsy world. But I considered many other areas before… Don’t ask me what I wouldn’t do because I don’t want to offend anyone, but there were things I knew that I didn’t want to do.

Dr Cross: Oh, yeah.

Dr. Wiebe: I knew I wanted to be central nervous system, I knew I wanted it to be cortical function and really almost anything related to that.

Dr. Cross: I suppose I started off life as you do in pediatric neurology as a pediatrician, and I loved all aspects of pediatrics, and you get training in all aspects before you decide where you want to go. As it happened, my first six months as a registrar was on the professorial unit, where I worked for the academic team, at least one of whom was a pediatric neurologist, and I ended up doing all the general pediatrics on that team because they did the specialist work. But it still inspired that interest, particularly in academia. I always said at the time I would never be an academic, which completely went out the window about 5 years after arriving at Great Ormond Street Hospital.

I did enjoy all aspects of pediatrics, but I specifically loved neonates, so I was torn between pediatric neurology or neonates. Neonates is a very practical thing; you see rewards very quickly. I loved the babies and my interest in infants has never gone away—the rapid development they have, the way the brain works and matures in such an amazing way, how many times it doesn’t go wrong, considering what we deal with, it doesn’t go wrong in the vast majority of cases, it’s absolutely amazing. But with neonates I probably would have burnt out in about two years, because I never left the neonatal unit. So I knew very early that probably wasn’t the way I should go, but neonatal neurology always fascinated me, so that may have been the direction I would go if it weren’t for pediatric neurology.

Were There Other Physicians in Your Family?

Dr. Cross: The nearest in my family was my grandfather, who was a stretcher bearer in World War I, and he wanted to do medicine, but he couldn’t because the family couldn’t afford it. My father was a marine surveyor and my mum is a music teacher. I now have a daughter who is a doctor, but none of my siblings did medicine, the nearest is a physio (physical therapist). I did not come from a medical background and my family thought I was completely nuts [to want to go into medicine]. I did want to be a dancer when I was 10 or 11, and my father did tell me in no uncertain terms that I needed to think of something else that was more useful for my brain. So no, I’m not from a medical background.

Dr. Wiebe: Neither am I. I come from generations of people who belonged to communities where an event like going to university, like you mentioned for your grandparents, Helen, was either not a possibility or not in the books. So no, not even remotely.

Presidential One on One

Dr. Cross: I think it’s always a tough act to follow when someone has shown true leadership, and we’ve been blessed over recent years with presidents that really are leaders and not least you, Sam. What has evolved over that time—it has been a real privilege to work on the management group with you and I just hope that I can continue it forward. I plan to continue it forward and I know you won’t be too far away, just on the Management Committee, but keeping going with the momentum and the same ideas. I think it’s the leadership of carrying the management group and the executive group with you, and yes, listening to everybody but moving forward in the same direction and not having different people pulling in different ways. So of course I’m looking for top tips, but I just hope that’s the way we will move forward over the next four years as well.

Dr. Wiebe: Thank you, Helen, that’s very kind. You did ask if I would have any words of advice [for Helen] and I would say not really. I think about the position and let’s think about Helen. Helen is extremely skilled, well experienced in leadership, in various aspects. One of the best liked persons around the world that I know. Very respectful of people and listening to people. If there’s one thing Helen and I have probably discussed personally it’s like you know, I’m like “I want to move on, I want to do this!” and Helen says, “Well you know, they have a point here,” and I say, “Ok, I’ll listen.”

So this is Helen. Tremendous organizational skills, such a well-rounded leader, and importantly, she has the constituency at heart. And goals that are pursued because you believe in them. So I have no advice. I’m just so happy that we have this leader to take on the presidency of the ILAE at this time.

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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.

Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.

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