Brooker Executive Perspective:
Graeme Shears, CEO of the Epilepsy Foundation
In this edition of Brooker Executive Perspective, we speak with Graeme Shears, who has served as CEO of the Epilepsy Foundation for an extraordinary 17 years. With a background in manufacturing and consulting, Graeme shares how operational excellence and purpose-led leadership have shaped his journey into the for-purpose sector. As he prepares to retire from his CEO role, Graeme continues to contribute globally through his work with the International Bureau of Epilepsy. His reflections on stigma, systems change, and people-first leadership offer timely insights for executives across all sectors.
Leighton:
Thank you, Graeme, for joining us on the Brooker Executive Perspective Conversation series. Can you please tell us about your current role?
Graeme: I am the Chief Executive Officer of the Epilepsy Foundation, which is based in Melbourne. We provide services to people and families living with epilepsy in NSW and Victoria, and we lead the Epilepsy Smart Australia program across Australia. I have been in this role for 17 years.
Leighton:
I’ve no doubt you have made a great contribution in your 17 years as CEO! If we can take you from the current day and rewind the clock back into your early career. Please tell us a little bit about your early career pathway that got you onto the path to where you are now.
Graeme: Early in my career, I worked across various manufacturing sectors, from food and electronics to heavy aerospace, but one of the most formative roles was as National Logistics Manager at a fastener manufacturer when I was 28. The CEO led us on a journey of Total Quality Management, inspired by Deming and Toyota’s just-in-time systems. This really helped to shape my thinking holistically about systems, performance, and process redesign.
One breakthrough was reimagining a 26-week production process by connecting slower machines into a continuous line, which cut turnaround to seven days. That experience shaped my mindset on operational excellence and sparked a career-long focus on performance improvement, which I have endeavoured to apply in every role.
Leighton:
From manufacturing to the Epilepsy Foundation – it doesn’t feel like the most obvious path. What shaped that journey?
Graeme: and over time, a promotion into the CFO role. Unfortunately the enterprise closed, which was disappointing for me.
But it prompted me to start a management consulting practice, in which I focused mostly on the not-for-profit sector, using my experience in systems and organisational performance. A major turning point was working with the City of Sydney on cultural change and strategic planning ahead of the 2000 Olympics. That experience helped me transition from manufacturing into the community sector – the overwhelming complexity and scale of the project shaped my thinking on managing diverse stakeholders, which is central to organisations like the Epilepsy Foundation.
Leighton:
So, how did you come to lead the Epilepsy Foundation?
Graeme: Initially, I was engaged to review the organisation’s performance. Following that, the Board asked me to act as interim CEO, and then, over time, to stay on more permanently. Around that time, my brother, as an adult, disclosed that he had epilepsy – something I never knew. That coincidental moment made the stigma surrounding epilepsy very real for me. And when the staff asked me to stay, I thought: if they want me here and I care deeply about the issue, then it’s worth committing to.
Leighton:
You’ve talked about a number of key elements from your background that you have built into a toolkit for your leadership roles. Could you tell me about some of the frameworks that you’ve built your leadership on?
Graeme: Early on, I used business excellence frameworks, which worked well in manufacturing. But when I started consulting in the disability (like Scope) and health sectors, I found that the language didn’t resonate. That’s when I discovered Jim Collins’ work. His evidence-based and practical leadership models clicked for me.
I have a Scientific brain, I’m thinking, “Well, where’s the evidence that what you’re saying works?”. So, the Jim Collins work to me had a range of evidence-based. And relatively simple concepts on the surface that I could really engage with well. I’ve applied that framework at the Epilepsy Foundation, and it’s shaped how I think about building culture, people, and purpose.
Leighton:
If you could rewrite some of the cultural narrative around Epilepsy, what would it be?
Graeme: I want to see epilepsy understood like asthma is today. Back when I was at school, asthma was stigmatised, so someone was labelled an “asthmatic”. Now it’s understood and managed. We still say “epileptics,” but we should say “people with epilepsy.” Language matters. If we reduce stigma, we reduce discrimination, and people can live fuller lives.
Leighton:
How do we do that? Could you share what the Foundation is doing to help create that change?
Graeme: Our mission is to improve the quality of life for those with epilepsy through understanding. That happens at three levels:
- For the Individual, if someone understands their triggers and risks, they manage their epilepsy better.
- In the Community, if teachers, disability workers, or colleagues know how to respond to seizures, people feel safer and more included.
- And in Society, if the general public is educated, we reduce stigma and open more doors.
Leighton:
You’ve worked in leading the Epilepsy Foundation for 17 years. And over that time there’s been lots of changes in our broader environments and certainly within technology. What trends have you observed that will bring potential for a positive outlook?
Graeme: The really new technology impacts are more impactful than anything I’ve seen in the last 17 years. Despite decades of new drugs, one-third of people still don’t gain seizure control. But tools like Epilepsy Smart Australia, which uses AI to analyse MRI, genetic, and neuropsychological data, are improving and supporting diagnosis by physicians. We’re also seeing advances like Epi-Minder, an implant that monitors seizures continuously, which is an implant under the skull, supporting drug therapy monitoring and more.
These innovations could lead to targeted drug delivery at seizure onset, massively improving quality of life by reducing reliance on heavy medication.
Leighton:
Seventeen years is a long time in a role. What’s kept you motivated through the tough times?
Graeme: Humility and willpower. I’ve always believed good leaders never stop learning. You listen, seek ideas, and surround yourself with people who know more than you. That humility, paired with the will to make meaningful change, is what builds trust and sparks innovation. When staff know you’ll follow through on good ideas, they’re more likely to bring them to you.
A proud moment was leading the development of Epilepsy Smart Australia, a national collaboration that unified resources and approaches across six organisations. That’s the kind of systemic thinking I value most.
Leighton: What advice would you give to people early in their careers, especially those considering the purpose sector?
Graeme: That’s a tough question in some ways. Most importantly, don’t be afraid to be humble. Not knowing everything isn’t a weakness; it’s often the mark of great leaders. Some of the best leaders aren’t the loudest in the room or pushy and overconfident; they’re the ones who listen, stay open, and keep learning. I’d encourage early-career professionals to back themselves, even if they don’t feel ready. You grow by stepping forward. You have to!
Leighton: So it’s partly about the mindset that you take?
Graeme: Yeah, it absolutely is.
If I reflect on some of the successes of the Epilepsy Foundation, it’s been because I avoid hiring what I call HMU’s. Which is “High Maintenance Units”. Yes, I got to a stage of being careful in employing people who don’t need to be managed. But more that they respond to being led.
Leighton: What’s the key difference in your mind?
Graeme: Also, choose to work with people who are self-directed and purpose-driven. Whether it’s a for-profit or a not-for-profit, you can instil that purpose, and that’s what helps glue it all together. If your people care more about the mission than personal gain, the person and the whole organisation thrive.
I think perhaps that’s a great place to wrap up. Graeme, I want to thank you for your time today and for being part of the Brooker Executive Perspective conversations.
– Leighton Cantrill