Hello! I’m Donna and I joined the International Bureau for Epilepsy [IBE] as Chief Executive Officer in January 2022.

Although my qualifications are in journalism, I have spent my whole career working in non-profit organisations, serving people living with neurological disorders. Directly prior to joining IBE, I worked as Executive Director for the European Federation of Neurological Associations, where I also served as a board member of the European Brain Council. Since joining IBE I have been actively involved in shaping and implementing our new strategic direction, with a focus on bringing lived experience to the centre of our organisation. With our growing team, I am excited about the new flagship projects and initiatives we are rolling-out to serve and support our chapters, and epilepsy advocates, worldwide.

The role I now enjoy at IBE builds on my previous experience, but has offered new and exciting opportunities for me to connect with inspiring people from across the world, and to get involved in global awareness raising, capacity building and policy advocacy for epilepsy. I also continue to engage with the wider neurology community in my role as Chair of the OneNeurology Global Partnership; positioning IBE as a leader in this field.

Hi, I’m Claire, IBE’s Head of Engagement. I joined the health charity sector in the UK in 2011 building a bowel cancer community awareness initiative, a research network of people affected by Parkinson’s and a national Patient and Public Involvement (PPI) in research programme. After deciding to work as a freelancer, I worked with several UK and European patient organisations, the Charities Research Involvement Group (CRIG) in the UK and a patient centred research company, MediPaCe, developing my knowledge and expertise in supporting pharmaceutical companies, patient organisations and people affected by health conditions to work together to better design and deliver health-related research and initiatives.

I joined IBE in August 2022 and lead on our flagship initiatives, IBE INVOLVE, including working closely with our Community Council, developing the Global Epilepsy Leader programme, as well as delivery of our Global Epilepsy Needs Study.

Hi, I’m Marie, a communications professional with two decades of experience specialising in capacity building within the non-profit sector. Throughout my career, I have helped patient advocacy groups enhance their voice and visibility using digital capabilities to raise awareness of their cause, engage communities and advocate for policy changes. I have always had a passion for connecting people and ideas through digital platforms, and it’s this passion that I bring to my role as IBE as Head of Communications.

I joined IBE in July 2022, and lead on our annual awareness campaigns, #50MillionSteps and International Epilepsy Day. In addition, I am involved in the launch of IBE’s new community platform, the Knowledge Hub and the Global Epilepsy Leader programme. I thrive in collaborative environments, such as at IBE, where I can leverage my expertise to empower patient advocates and drive positive change.

Hi I’m Eli, and I joined as IBE’s Engagement Officer in March 2024. From my background in science communication, I’ve worked on bridging the gaps between scientists and the public through dialogue, accessibility, and public and patient involvement. One of my biggest drivers is the importance of involving people with lived experience in the research, laws, and initiatives that impact them. That led me to IBE’s door: their commitment to amplifying the diverse voices of the global epilepsy community continues to advance initiatives for people with epilepsy and their caregivers, and I am excited to be part of its future. I love working on IBE-Involve with our brilliant and dynamic Global Youth Team, Community Council, and global chapters – working together and sharing ideas brings about such creative and impactful ways to improve the daily lives of people living with epilepsy around the world.

Hello! I’m Niamh, IBE’s Communications Officer. I joined the team in March 2024, drawn by their meaningful work in epilepsy awareness and social change. My academic background in anthropology has inspired a passion for exploring the ways in which cultures, societies, and politics influence individual and collective experiences. This led me to working as a journalist for three years, where I loved being able to write about the complexities of social experience and convey the diverse narratives of people’s lives. At IBE, I have greatly enjoyed applying my skills in communication and creativity to amplify the voices of those affected by epilepsy and help to build greater understanding and support within the community. I’ve particularly enjoyed designing resources for our upcoming Global Epilepsy Needs Study and I’m excited to help facilitate greater community connections on our new platform, the Knowledge Hub.