International Epilepsy Day, held annually on the second Monday in February, unites the global community in advocating for people impacted by epilepsy. A key part of this effort is sharing personal stories and experiences to raise awareness and spark conversations that drive meaningful change. 

At FutureNeuro, our My Moving Brain public engagement initiative, funded by a Research Ireland Discover Award, is playing an active role in these conversations through a series of community connect events across Ireland. These events bring together individuals, families, sports clubs, and healthcare professionals to explore the challenges that can potentially prevent people with brain conditions from participating in sport—and, more importantly, find solutions. 

Empowering Communities Through Conversation 

Lyndsey Butterworth, Education and Public Engagement Manager at FutureNeuro and Co-lead of My Moving Brain, explores the project’s purpose: “By co-creating a series of inclusive community events where everyone can contribute to the discussion, My Moving Brain aims to identify barriers and opportunities so that people living with a range of brain conditions can access the many health benefits of being active.”

The impact of these events is already being felt. One of the key takeaways from the first My Moving Brain event in Dublin was the importance of building confidence—not just for individuals and parents of children with epilepsy, but also for sports clubs and coaches providing inclusive activities. 

Supporting Sports Clubs with Epilepsy Awareness 

Epilepsy Ireland has a strong track record of delivering epilepsy awareness training for the sports community. To continue building confidence in supporting the participation of people with epilepsy in sport, they partnered with Dún Laoghaire Rathdown Sports Partnership (DLRSP) to deliver an Epilepsy Awareness Webinar for sports clubs, volunteers, and coaches. The response was overwhelming, demonstrating the strong interest in ensuring sport is accessible to all. 

Gwen O’Looney, Sports Inclusion and Disability Officer at DLR Sports Partnership, emphasised the importance of this training: “The DLR Sports Partnership offers a range of training courses, including epilepsy awareness, and the response has been overwhelmingly positive. With over 1 in 100 people in Ireland living with epilepsy, it’s likely that coaches and volunteers will encounter someone with the condition on the pitch or court. Knowing how to respond is essential, and we’re committed to running more sessions to meet the demand.” 

The webinar provided essential information on epilepsy awareness, seizure types, and emergency response. Feedback was overwhelmingly positive, with participants surprised at the variety of seizure types and feeling more confident in their ability to support someone with epilepsy. 

Speaking about the organisation’s involvement in the My Moving Brain Initiative, Epilepsy Ireland’s Advocacy & Communications Manager, Paddy McGeoghegan, highlighted how the project will help to enhance the inclusion of people with epilepsy in sport.  

“There have unfortunately been instances of people approaching our service who have not been included in a sporting activity due to their epilepsy. Often, this is simply down to a lack of awareness of the condition and when simple safety measures are put in place, a person with epilepsy can fully participate. From an Epilepsy Ireland perspective, My Moving Brain is an incredible opportunity to continue our work in this area and further educate those involved in local sporting activities about epilepsy. Through the lived experience of epilepsy being shared at the Dublin event and planned for future events, we have no doubt that so many more people will be better informed about epilepsy because of this initiative”. 

Looking Ahead: Expanding Inclusion in Sport 

Building on this success, the My Moving Brain team aims to expand these initiatives to support greater inclusivity for people with epilepsy, Parkinson’s, multiple sclerosis, and other neurological conditions. 

Want to be part of the conversation? Join us for the next My Moving Brain Community Connect Event in Cork on March 22, 2025. More information is coming very soon! 

Further Information  

For International Epilepsy Day, our colleagues in Epilepsy Ireland are promoting how to correctly respond to a seizure through the key words of TIME, SAFE, STAY. Visit the Epilepsy Ireland website for more information and be clear on how to respond to a seizure!