Global strategies and local responses were at the forefront of the 14th Thinking Outside the Box Epilepsy Symposium. Posed with the subject of Bringing the Intersectoral Global Action Plan to Life, speakers spanning a range of disciplines and backgrounds brought knowledge and personal lived experience to these insightful conversations.
Starting off on the international stage, Claire Nolan joined us from London to speak on how the International Bureau for Epilepy is centering people with epilepsy in their work through the development of their Global Epilepsy Needs Study. As our Keynote speaker, Dr Rowena Mobbs further explained the Intersectoral Global Action Plan and how it intersects with brain health on a larger scale. Dr Mobbs was joined by her patient and Patron of Epilepsy Queensland, Wally Lewis, the pair having a candid conversation about epilepsy, chronic traumatic encephalopathy (CTE) and preventative measures being taken to improve brain health outcomes.
Professor Terry O’Brien, Dr Zoe Thayer and Professor Glenn King brought their research and clinical expertise to the middle session, touching on different areas of treatment and self-management for people with epilepsy. To date, many anti-seizure medications on the market primarily address the symptoms (seizures) of epilepsy as opposed to being disease-modifying therapies which Prof O’Brien identified as a major gap in treatment in his presentation. While Prof O’Brien explored the details of how sodium selenate could be the answer, Prof King shared his research into the benefits of using arthropod venom-based treatments in conjunction with patient-specific organoid testing. Many of those with lived experience in the audience were keen to hear of these developments in treatments options in addition to the HOBSCOTCH program Dr Thayer is involved in, which supports people with epilepsy to improve memory and cognitive function.
Broadening our scope on what it means to support people with epilepsy, we heard from Parish Rawlins drawing on her expertise as an Occupational Therapist specialising in this area. She noted there can be a lack of understanding amongst the general population as to how OTs can assist individuals, and even moreso when it comes to the supports they can provide for people with epilepsy. There is also an incredible need for robust Peer Support models such as the Epilepsy Smart Australia Peer-Led Support Pilot Program which Leonie Hogarth touched on in her presentation.
With lived experience in mind, it was important to give a platform to those who are impacted most by this condition and so the ‘It’s Smart to Talk About It’ segment was brought back with a focus on parents of children with epilepsy. After watching a poignant and raw video showcasing the true impact of different family’s journeys, our panel discussed the emotions, challenges and hopes they have for the future, reaffirming the importance of the lived experience voice in all conversations.
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