Navigating the 35th International Epilepsy Congress: Advocacy, Awards, and Collaborations
The Convention Centre in Dublin, Ireland opened its doors to the 35th International Epilepsy Congress (IEC) from September 2–6, 2023. The IEC is a biannual event hosted by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy, bringing together epilepsy advocates from around the globe.
Presented at the IEC, Golden Light Awards recognize the contributions of people affected by epilepsy in their community. This year, Fall 2022 Fellow Fides Peter Uiso from Tanzania was selected as a recipient of the award, with nominations received from across the world. In attendance was the 2019 recipient, Spring 2023 Fellow Nina Halima Mago from Uganda. Nina and Fides leveraged their connection through the Professional Fellows Program on Inclusive Civic Engagement and the opportunity to come together with other advocates from East Africa at the IEC to form the first East African Epilepsy Consortium.
In the following blog contribution, Nina and Fides describe their experiences of the conference and how being Golden Light Award recipients propels them forward in their epilepsy advocacy.
Spring 2023 Fellow Nina Halima Mago:
Since receiving the IBE Golden Light Award in 2019 in Bangkok, Thailand, I have become more involved in various programs and activities within the epilepsy space, in addition to leading my non-profit organization, the Purple Bench Initiative (PBI), in Uganda. Drawing from my experience of living with epilepsy and exploring aspects that presented the most challenges for me, I quickly found my purpose in addressing the challenges, grievances, and setbacks faced by young people living with epilepsy.
The experiences shared with other awardees inspired us to dream of creating a space where young people could find joy in connection, friendship, and learning on a global platform. This vision gave birth to the Global Youth Team. I have served on the board ever since, and an environment free of judgment has enabled us to thrive.
Fast forward to 2023, we could hardly hide our excitement about coming together again at the 35th International Epilepsy Congress to attend the inaugural Global Youth Summit. Young people from the IBE, Young Epilepsy UK, Epilepsy Ireland, and Epilepsy Connections participated in the summit. Hearing the individual thoughts, interests, and experiences of these group members was insightful. Witnessing the excitement and watching young people finding their confidence as the summit unfolded was heartwarming. Presence and interaction played a crucial role in building confidence and self-worth, both of which are chipped away daily when living with epilepsy.
Radio serves as one of the tools I use to reach a wide range of listeners, and it was no different at the IEC when I shared my thoughts and perspectives on epilepsy in low- and middle-income countries on Flirt FM College Campus Radio DAC. Disability advocate, Lorrain Lally, led the dynamic discussion, featuring a lineup of collaborators in the global epilepsy space.
My advocacy efforts have now spanned every continent. Imagine having worked with different individuals and organizations on various projects over the years and being able to meet many of them over the course of a few days. It was a lot to take in, but a wonderful opportunity to strengthen relationships and strategize for the future. It was also a good reminder that we are all in this together.
On a regional level, there was much to celebrate and contemplate. Epilepsy is a highly stigmatized condition, and stigma poses a greater challenge than the condition itself. Stigma and discrimination create barriers that affect healthcare-seeking behavior, access to education, employment, and the overall quality of life. While this challenge is global, its impact is more pronounced in Africa, and so we must understand the unique challenges it presents. At IEC 2023, the executive preview of the documentary, “The Curse of Stigma,” jointly produced by the BAND Foundation and Whitten-Newman Foundation, reflected on this challenge. We have extensively discussed how detrimental stigma continues to be to us as individuals and to the work we do toward attitude change.
At the conference, I also finally met two East African colleagues: Fides Peter Uiso, a devoted mother of a child with epilepsy and a Professional Fellow like myself, with whom I share an amazing mentor, and Fredrick Beuchi, a brother to an ever-joyful sister living with epilepsy. Our experiences have shaped the course of our lives and propelled us beyond the barriers that have stood in our way. We have strived to make a difference in our communities, aiming to change the lives of people living with epilepsy. I am proud to celebrate Fides’s Golden Light Award and Fredrick’s Ambassador for Epilepsy Award as we turn a new page and pave the path for East Africa’s young epilepsy advocates.
Fall 2022 Fellow Fides Peter Uiso:
As a passionate epilepsy parent advocate and the founder and CEO of the non-profit organization, Tanzania Epilepsy Foundation, I was thrilled to be among the three winners this year and to be the first IBE Golden Light Awardee from my country, Tanzania. The entire experience opened doors for me to learn and create a broader network with advocates for epilepsy, including medical professionals and innovators.
The award has facilitated stronger collaborations with other epilepsy activists from East Africa (Kenya, Uganda, and Rwanda) with whom I have been working with and learning. During a meeting with Spring 2023 Fellow Nina Halima Mago and Fredrick Beuchi from Kenya, we had the opportunity to sit together and strategize on how we can collaborate to end epilepsy-related stigma across East Africa. We each represent different years as Golden Light Award winners.
Additionally, One New Heart Tanzania, upon seeing the social media posts about my award, approached me and invited me to serves as their volunteer Child Health Heart Care Coordinator. This organization conducts free heart screenings, cardiac catheterizations, and cardiac surgeries for babies. During our discussion, they shared their plan is to establish a pediatric cardiac and neurodevelopmental care center in Tanzania, which was excellent news for me and for my future epilepsy activities.
I am also thankful for the Professional Fellows Program experience, as I am still in regular contact with my mentor in my ongoing work.