27 March 2020
Thanks to everyone that attended our first online forum yesterday on #purpleday!
We hosted over 50 people from around the world, with representatives from Africa, America, Asia, Australia and Europe! The focus of discussion was how technologies could be utilised to make managing epilepsy at home easier. Hosted on zoom, we needed to get used to raising ‘virtual hands’, working out how to unmute at speed, as well as having panel discussion alongside lively chatroom activity! A recurring observation was that by running the event by video conference it opened up the conversation to a broader and more diverse set of voices – an unexpected positive during these difficult times.
Our panel included global epilepsy advocate Torie Robinson, CEO of Epilepsy Sparks, and a community advocate, Simon Privett, Epilepsy Action’s Volunteer of the year, Caoimhe Bennett, Research & Policy Manager from Epilepsy Research UK, Dr Leandro Junges, a researcher from the University of Birmingham, and was chaired by Professor John Terry, who is Director of the Centre for Systems Modelling and Quantitative Biomedicine and Co-founder of Neuronostics.
University of Birmingham
Epilepsy Research, UK
To open up this special #purpleday event, we were delighted to hear from Cassidy Megan – the founder of #purpleday – who explained how she had built up this global movement by initially speaking to friends and teachers when she was just 8 years old in Nova Scotia. Now 21, she continues to play a pioneering role in a day that has become central to the worldwide epilepsy community. A powerful example of how much difference you can make as an individual!
During the event a few key themes emerged around:
- recognising that everyone with epilepsy is different and so technologies must reflect there is no ‘one size fits all’ approach
- the power of educating yourself and others about your condition
- ensuring productive interactions with your clinician, and so participate more confidently in decision-making
- technology offering the opportunity to enhance connectivity and improve mental health
- technology opportunities that differ across the globe: the needs of low and middle income countries are very different to developed nations
- how to better enable many wonderful organisations and charities operating globally to share best practice and work together to maximise impact.
We talked for 2 hours, and could easily have gone on for longer (although perhaps not for our Australian participants, as it was 4am there!). We’re now already planning for the next event, and will be looking at some of these discussion points as future topics.
Thank you so much to everyone that participated – please get in touch with any ideas for topics to discuss (or if you definitely would like to hear more about any of the above!). Either drop us an email at firstname.lastname@example.org, tweet us @neuronostics, or like our page on facebook – https://www.facebook.com/neuronostics/ to join in the conversation!