On the 2-6 September 2023, the 35th International Epilepsy Congress (IEC) was held in Dublin, Ireland. Organised by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), the bi-annual event saw epilepsy specialists and healthcare practitioners from all around the world come together to network, engage in discussions and catch up on all the latest epilepsy advancements and research. This was the first congress that has taken place post-COVID.
Chief Executive Officer of the Epilepsy Foundation, Graeme Shears, who also happens to be Treasurer of the IBE and a member of the IEC Dublin Scientific and Organising Committee, attended the event. Graeme was exceptionally proud that the congress was able to include so much lived experience amongst discussions this year. This reminded everyone in attendance that each data point represents a life, a family, and a unique journey.
Graeme: “There was a lot more involvement of people with lived experience. Starting many sessions with the lived experience of somebody and then talking about the science and new medical improvements to manage the condition they have – that was probably the biggest change for the congress. It was really exciting and reported to be very well received.”
Another highlight of the congress included public sessions, which were held over two evenings and featured talks by renowned epilepsy experts that were accessible to everyone. Graeme found main sessions on developmental and epileptic encephalopathies (DEE) particularly interesting.
Graeme: “The discussion was predominantly around patient perspective. What are the top concerns for them? Obviously, seizures are important, but there are other issues for kids with rare and genetic epilepsies around things like communication and sleep, among others. You learn about a range of new disease modifying initiatives not yet available and the need for outcome measures, and then we need to consider what this means for the research we fund.”
Speaking at the congress was the Epilepsy Foundation’s Chief Medical Officer, Prof. Sam Berkovic, who delivered the Fred Andermann Lecture in Clinical Epileptology. This is the first, named lecture at the IEC, and aims to enrich the congress with a full lecture by a prominent epileptologist, honouring the memory of Fred Andermann, and also to honour the lecturer. Prof. Berkovic had been Fred’s research fellow from 1984-1987, and was selected due to his international contributions to understanding epilepsy and ground-breaking insights into understanding the nature and treatment of epilepsy. His lecture centred on the genetics of epilepsy in 2023.
The Epilepsy Youth Summit was also a monumental part of the congress, which, for the first time, connected young people living with epilepsy and focused on building leadership skills and learning more about epilepsy research. Many of the 27 young people who attended regarded it to be a life-changing experience.
While making the rounds at the congress, Graeme was fortunate to meet 24-year-old IBE Global Youth Team member, Cassidy Megan, who was presented with the Social Accomplishment Award. The award is presented to a person who has made a significant contribution to the social wellbeing and quality of life of people living with epilepsy.
Graeme: “I haven’t met Cassidy before, but this was a great opportunity to catch up with her. She’s someone who has made such a difference to raising awareness of epilepsy.”
Cassidy is the founder of Purple Day, which was first conceived in 2008 and is now celebrated annually on 26 March. She created the day due to her own struggles with epilepsy and wanting others living with the condition to know that they are not alone on their journey. Cassidy played an active part in the Youth Summit, alongside Scarlett Paige, the Chair of the IBE’s Global Youth Team.
Reflecting on the congress, Graeme recognises the importance of events such as this one within the scope of the work the Epilepsy Foundation conducts. He notes the significance in being able to connect with people from all around the world who belong to the same cause and share the same goals of raising awareness for epilepsy, educating others and continuing to progress research into understanding the condition.
Graeme: “I believe the value in events like this one is found in forming relationships with the world’s key researchers so that we have a global network that we can always reach out to for support. Likewise, meeting other epilepsy world leaders and exchanging ideas and learning from each other expands the way we think and move forward. We’re all dealing with things in different ways and in different settings.”
Graeme and members of the ILAE and IBE will soon begin planning the next International Epilepsy Congress, which is set to take place in Lisbon in 2025.
For more information on the 35th International Epilepsy Congress, please visit www.ilae.org/congresses/35th-international-epilepsy-congress