Newswise — The International Bureau for Epilepsy (IBE) is an epilepsy advocacy organization with nearly 140 chapters in more than 100 countries. ILAE talked with two of its presidents—Martin Brodie (2017-2021) and Francesca Sofia (2021-2025)—about their paths to the presidency and their hopes and plans for the future.
Video transcript
Paths to IBE
Martin Brodie: It is interesting because I initially worked for ILAE. I set up the secretary general of the European commission because I was running meetings in Europe which were not ILAE meetings, and they didn’t like that. So we had long conversations and they recruited me, which was probably the easiest way of getting rid of me!
Then I became president of ILAE's European Commission for four years, after which I became vice president of ILAE, and then for four years I was treasurer. At about that time, there was a crash with the money. We had made arrangements for giving money to people in different parts of the organization and halfway through we had to change it all and take all the money back. And I thought about whether I wanted to carry on with this. I was busy with my own research and my own group and I realized I couldn’t really do all this properly, so I quietly backed off, about 12 years ago.
And gradually, as my career started to wane, it struck me that I really wanted to give something back to people with epilepsy. Treating people with epilepsy, being nice to them, taking to their families, that’s my business, but that’s not the same. So, trying to give something back to people with epilepsy I put my name forward as president of IBE. I didn’t really expect to be elected and I was only elected by two votes. And then I thought gosh, what have I done? It sounded like a good idea at the time, you know, to be president, but I’ve got to do something with this, and I’ve got to make a difference.
So I looked at what I inherited, and of course right about that time the situation started to be different with the congresses, they weren’t making as much money and a lot of the IBE money came from congresses, so we had to look at a new way forward. And then of course we had COVID, and the whole business had to change. And I looked to what I could do and what I couldn’t do, and I realized this was an opportunity to make a big difference in the way IBE works and to what we can do with people around the world—because we’re all talking to one another in a way we never did before COVID came along.
So chance, a lot of it chance, but nevertheless I now think that what I did over the past four years is way more important than what I did in the previous 25, 30 years.
Francesca Sofia: In the beginning of my professional path I wanted to become a neuroscientist, or a scientist, and I did a PhD in neuroscience, studying the function of a gene involved in brain development. We actually found this gene was mutated, we found a mutation in a couple of families who had what at that time was called idiopathic generalized epilepsy.
After my PhD, I became interest in the economics and management of the biomedical research sector, and obtained a Master’s degree in international health care economics management and policy, which led me to a visiting scholarship at Georgetown University's Kennedy Institute of Ethics in Washington, DC.
There, I studied and researched bioethics and science policy. It was through these studies that I decided that science management could be a good fit for me, and an opportunity came soon after, when I was recruited by a major Italian charity, the Telethon Foundation, whose mission is to advance research toward the cure of rare genetic diseases.
As a manager there for about 10 years, I have gained longstanding experience in matters pertaining to science evaluation, management, and the development of a research portfolio contributing to a community of stakeholders. Another important part of my position in Telethon regarded the management of the Patient Support Office, an office that gathered all outreach activities with stakeholders, but mainly patients and their organizations.
If I connect the dots, I would say I was preparing for the big transition that happened later, with my daughter’s epilepsy diagnosis. Epilepsy crossed my life path twice, and the second time it would stay there forever. [Francesca’s daughter Beatrice was diagnosed in June 2011, at the age of 20 months. She has multiple seizure types, including tonic-clonic seizures; medication has not helped her to become seizure free.]
So I became part of that community of people, those in need of cure and care, and on whose behalf I had worked as a manager until then. Eventually I embraced a new personal and professional path when I joined the Italian Epilepsy Federation, which led me to start collaborating with the IBE. I served with the IBE for four years as a member of the European Regional Executive Committee, and gradually I became passionate about the IBE and began to see the opportunity for long-overdue social change for the epilepsy community.
Through its global network, its advocacy capacity, the IBE can be the driver of a life changing movement, and that’s why I wanted to be part and to contribute to this change, and that’s why I’m here. I hope to witness the beginning of a life changing movement.
From Researchers to Advocates
Martin Brodie: I came from nothing; my father cut hair for a living. So for me to have the opportunity of doing something for people has been such a privilege – I like to think I’ve done bits and pieces for myself, but that’s never been the driver for me. I’ve sort of regarded my research as being part of what I’m doing for people with epilepsy. It’s always been practical, not basic—not much of it, anyway. And it’s always been geared toward doing something positive.
How different is that from what I’m doing now? Hugely different. Just to have the opportunity to see what is needed and to aim at a goal that I believe we have to have, to make a difference for people with epilepsy, whether it’s through the World Health Organization or individual clinicians or just talking to people, it really is what it’s all about.
If I can have somebody special take on my role, and there’s a special person sitting opposite me here, then I’ve achieved something. Because when I started, the organization wasn’t going in the direction it needed to go. I can say that and I hope people would agree, and it took about a week to figure that out, and then it took a lot longer to figure out what to do about it.
I don’t think there could be more different presidents of organizations than Francesca and me. We are completely different. I am an epileptologist. I trained as a clinical pharmacologist and a general physician, I’ve done emergency medicine a few years back before I took over IBE, and I’m not a neurologist.
In 1982, when I came back to Glasgow, I thought what am I going to do as a career. I was doing emergency medicine, but I hadn’t had a particular specialty as such, and I had been working with carbamazepine as a clinical pharmacologist to see what it did to drug metabolism and particularly insulin metabolism. Of course it was a well-known anti-seizure drug at the time, so I thought I’d do some studies. So I started to put some studies together, mainly volunteer stuff and more in patients, and no one had done epilepsy as a specialty and so all of the patients that people had were referred to me. And I realized that there was a potential that I could do something worthwhile.
So we set up the epilepsy clinic a long time ago, way before your time Francesca, in 1982, I set up my clinic and I started to do the trials, the regulatory trials and pharmacological trials. And as I said, people were sending me patients and I was getting patients from emergency, because usually as soon as they came in with a seizure they were sent home again. We set up our services and we started looking at living with epilepsy over many years. There was nothing published, and we were highly cited—one of the papers is the most highly cited epilepsy paper in the New England Journal of Medicine, with Patrick Kwan who is now in Melbourne.
It was all sort of chance, really, except that I always regarded myself, working as a clinician and a doctor, as someone who cared about patients. So I was able to link a research interest with that. And with that, I could make a difference for people with epilepsy.
But it’s one thing for me to do something in a clinic for a person with epilepsy, and it’s a very different thing for them to make a difference in their community, in their lives, and for their family, and for other people’s families. And we have to give them the opportunity to make those achievements for themselves and for others.
Inspiration: What Stands in the Way Becomes the Way
Francesca Sofia: Rather than actual role models, there are two inspirations I would like to share because I believe they are guiding me in this journey. The first comes from the Stoic philosophy and Marcus Aurelius, the Roman emperor. And as I say this, I realize it could be used against me for delusions of imperialism, which could not be farther from the truth!
The reality is that in my darkest hours, I found relief and strength in reading Marcus Aurelius. It allowed me to see opportunity in even the greatest loss of my life. He wrote something that I think applies to all lives and all undertakings, including leading an international organization that faces big challenges and a lot of obstacles. What he wrote, I have it on my desk. It sits on my desk all the time and I go back and read it especially when I’m feeling down.
What Marcus Aurelius wrote is, “Our action may be impeded, but there can be no impeding our intentions or dispositions, because we can accommodate and adapt. The mind adapts and converts to its own purposes the obstacle to our actions. The impediment to action advances action. What stands in the way becomes the way.”
This is exactly what happened to me when I decided to embrace the cause of, you know, becoming an epilepsy advocate. Epilepsy was my big obstacle and I fully embraced it.
The second inspiration comes to me from the history of mankind. What has led us to achieve great things as a species is our intrinsic ability to connect to each other and to cooperate flexibly in large numbers. So I hope to lead an IBE that will become more and more connected to its membership and the society, the outside world, able to cooperate flexibly with all stakeholders and ultimately capable of turning all obstacles upside down.
Goals for 2021-2025
Francesca Sofia: My goal over the next four years is actually to plant a seed for the long-awaited social change I just spoke about, and kind of enabling the process that will lead to a change for our community. For this to happen, in my opinion, we need a three-level strategy and that’s my plan. Individual level, community level, and ultimately systemic level.
I think at the individual and community levels, the IBE can count on its membership and work with them to increase health literacy, first, and engagement of people with epilepsy and their families, so they become more and more able to cope with epilepsy, more effective in their interactions with the health system, and ultimately more fulfilled in their lives. So I think education and engagement are priorities in my plan.
At the systemic level, the IBE has always played a crucial advocacy action together with the ILAE, and I think global advocacy will be crucial during my term, with the approval of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. This will mark a major turning point after decades of relentless effort from the IBE and ILAE. I think we’re now going to have to become even better advocates if we want to see this plan turn into real change.
Training Programs: Health Literacy and Self-Management
Francesca Sofia: For education, when I speak about education and health literacy, the plan is to build a training program for people with epilepsy and their families first, that ultimately will increase their health literacy of course and their self-management capacity.
Health literacy is an important determinant of health, and we believe we need to equip people with epilepsy with skills so they can cope with epilepsy in their daily lives and be more effective in looking after themselves so their quality of life will improve.
This program will be called the IBE Academy and will be a two-level program. There will be training for people with epilepsy and families and caregivers on epilepsy and the management of epilepsy, but there also will be second-level training for people committed to becoming epilepsy advocates. We hope to train people who can stand up and speak for our community on behalf of the 50 million people living with epilepsy worldwide and interact with regulators, public health authorities, media, and civil society.
IBE Academy and Other Initiatives
Martin Brodie: The initiatives that Francesca started to discuss all link into the way of bringing people with epilepsy and the people that care for them into our global agenda, into our local agenda of course too, but also into our global agenda.
The academy is the is the most ambitious part of this program. But we also have a research group that we’re working on. We’re looking at a youth action group. We’ve got a group we call Professional Achievements so that we can help people do something with their lives that they want to do, and that they felt like they couldn’t do before.
So all of these things link to the Academy and sort of brings everything into the same goal, which is for people with epilepsy and people who care about them to actually run the epilepsy business, rather than academics and clinicians. I have nothing against a doctor or doctors, but at the same time doctors think differently from those who aren’t medical. And although we are not saying we’re never going to work with doctors, I think the scenario I see our organization going to is very different from the one we’re coming from, and I would like to think that I was the guy who started it, and started the process, and Francesca’s the one who takes it forward and then we’ll see where it goes.
Working with ILAE
Martin Brodie: I think this is very important—I think neither can flourish without the other. Whether you are partners or working together maybe isn’t important, as long as you do it. When you’ve got a big organization that has funding from journals and other things, and you’ve got a little organization that is really about people and what we can do for people, it doesn’t link up easily. What I don’t want to see is the big organization eat the little organization.
One of the reasons I was so keen to develop the organization in the direction it’s going, to have Francesca and other colleagues involved, is because Francesca can’t possibly look like ILAE. I can. I am now IBE and I am aware that I don’t want ILAE people in IBE—working with them yes, but not part of it. This is part of a discussion because I know some people in ILAE think it would be beneficial for us and ILAE to be connected, and there are many organizations where the lay organization and the medical one do work together and they like it. I have no problem with that. Would that happen for us? I don’t know. It might happen 20 years from now. But I think it’s important to be separate and represent different aspects of epilepsy and people with epilepsy, and we have goals that are synergistic but not the same.
That discussion is going to be there whether you like it or not—do we need both organizations? I am absolutely convinced that we need both. It would be nice if we had some of ILAE’s money, or anybody’s money. You asked me what I could have wished for earlier. When I took over four years ago, somebody wrote to me and said I’ve got a person with money and they want to give it to IBE and it’s a million dollars. So I started thinking about how to spend a million dollars, and I’m still thinking about it because we never got it.
So I hope Francesca gets her million dollars when she takes over IBE, because that would make such a difference. We have to have money and we have to have commitment, and positivity, and success. We have to have pleasant interactions and we have to care about each other and we have to care about people with epilepsy. All of that we can do as partners with ILAE or separately with ILAE, but always with ILAE.
Francesca Sofia: I completely share your vision of a strong partnership that can become even more powerful. I think the big challenge IBE and ILAE are facing demands a very strong partnership, a renewed partnership. The challenge is huge, including the lives of people with epilepsy. To succeed in this we need to go beyond our circle, we need to focus on the outside world and find ways to influence society. We can succeed by integrating our different skills and perspectives.
I am a runner, so I see this partnership as running a relay race, passing the baton to each other, always believing that one day we will be able to cross the finish line.
In this new partnership of care and the two organizations that have different ownerships of the epilepsy endeavor, we will really make a life changing movement real and active. That’s my view.
President to President
Francesca Sofia: There is one last thing that I feel strongly I need to share, and that’s my thanks to Martin Brodie. He made it possible. He planted the seed of the change that is happening, and it is thanks to him that I’m here, and I’m comfortable in this position because I feel he’s behind me. He is my mentor and a light that will guide me in the journey for the coming four years. Thank you, Martin.
Martin Brodie: Thank you very much. That’s very kind of you to say that. That means a lot, because as I say I’m a different person now than when I took over IBE four years ago. You’ve been part of helping me to see the way forward, too. I don’t think anybody who works in epilepsy could do anything else but work together, because it’s such an awful thing to have and it affects the family and we all know that. So how can we do something to make a difference? We must think that way; everybody must think that way.
I think we’ve covered what we both feel and not just what we think. The bits of it that are what we think are nowhere near as important and relevant in real life as what we feel. I just hope that we can find many more people who feel the way we do about what needs to be done for epilepsy. Not necessarily those who do it, I mean that’s your own choice, but who feel that they want to help.
Whether it’s medical or lay people, people with epilepsy or people who look after those with epilepsy, the challenge is there for all of us. And people with epilepsy and their carers deserve help. It’s very difficult to put that into words—you could say that about any disorder, any medical condition, but epilepsy somehow or other is different, and it’s been different for 4,000 years, 6,000 years. It’s in the history books, right from the beginning of 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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