It’s been an exhilarating journey since the curtains fell on the NEUROSENSE Summit 2023. A month has passed, but the echoes of those remarkable two days continue to resonate through our community. As we step back to reflect on the significance of this event, we’re filled with profound gratitude for the collaborative spirit and insights that have accelerated our mission in epilepsy and SUDEP research.
From the very beginning, the NEUROSENSE Summit 2023 was infused with an energy that transcended borders and disciplines. A palpable sense of team spirit united us as we embarked on a journey of intensive scientific discussions. The conversations were intense, yes, but they were also profoundly fruitful, leaving us with insights and perspectives that are shaping the future of SUDEP and epilepsy research.
Our heartfelt thanks extend to everyone who played a pivotal role in making this event a resounding success:
- Bibic Irena and José Ángel Aibar, representing the NEUROSENSE Patient Advisory Board, your insights as representatives of people with epilepsy and caregivers are a guiding light in our mission to make a meaningful difference.
- To our esteemed Advisory Board members, including Emilio Perucca, Torbjörn Tomson, Riccardo Paolo Camisasca, Winfried Wagner-Redeker, Tino Rossi, Andre da Costa, Eduardo Moura, Mathieu Bollen, João Claro, Alberto Salleo, Joaquim Costa, Filipe Sousa, Paulo Magalhães your guidance in our scientific discussions is the compass that keeps us on the right path. Your expertise is invaluable, and we are deeply grateful for your unwavering support.
- A special shout-out to all the NEUROSENSE Consortium members, including Onur Parlak, Carlos Conde, Sándor Beniczky, Philippe Ryvlin, Sidsel Armand Larsen, Adriano Bernini, Massimo Mantegazza, Fabrice Duprat, Ricardo Matias, Claudia Louro, Beatriz Mano, Miguel França, Ricardo Peixoto, Ana Pinto Branco Teixeira, João Ferreira. Your proactive engagement and unwavering team spirit were the driving forces behind our achievements.
During the Summit, we unearthed several important insights:
- The difference between caregivers and persons with epilepsy (PWE) was discussed, particularly in terms of emotional guidance versus SUDEP awareness.
- Data sharing was a significant topic, with the potential for patient organizations to bridge gaps.
- The issue of SUDEP awareness was raised, with the observation that PWE often lack knowledge due to limited physician communication.
- The potential impact of a device on caregivers, particularly in improving their quality of life, was discussed.
- Future seizure detection is expected to be personalized to individuals, recognizing that one device cannot fit all.
As we mark one month since the NEUROSENSE Summit, the momentum it generated continues to drive us forward. The knowledge shared, connections forged, and the enthusiasm ignited during those two days are the foundation for future breakthroughs in epilepsy research.
Stay tuned for more updates and initiatives from the NEUROSENSE Consortium. Together, we carry the torch of progress forward, inspired by the shared vision of transforming the lives of those affected by epilepsy.
In closing, the NEUROSENSE Summit 2023 was not just an event; it was a celebration of collaboration, dedication, and the relentless pursuit of knowledge. We thank everyone who has been a part of this incredible journey, and we look forward to the transformative impact that awaits us in the future.
With heartfelt gratitude,
The NEUROSENSE Consortium