Beyond Epilepsy Youth Conference

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Beyond Epilepsy Youth Conference – a great success!

Witnessing the power of bringing young people together who have a shared life experience of epilepsy is powerful and can be life changing.


Earlier this year, we brought together a group of 18-24 years olds living with epilepsy to share their experiences, build connections and create new friendships while learning about their own epilepsy and new ways to view it. The conference provided a safe platform for the group to express their ideas and gain new strategies to manage their own mental health and self-talk through. Guest speakers, workshops and fun activities supported the group to explore interpersonal trust and look beyond their epilepsy over the two-day conference.

Making themselves vulnerable and sharing personal stories of living with epilepsy, each participant walked away with new strengths and confidence in telling their own story, giving them the power to convey their story to potential employers, the people around them, their own communities and even to potential partners. Owning the narrative of their own health condition is powerful and contributes to positive mental health and wellbeing.

Many of the young people attending, had not met others living with epilepsy before and they worked together to rapidly gain each other’s trust and learn new skills.

How many of you would have attended a Poi workshop? This workshop took each person outside the boundaries of their comfort zone, they showed that persistence and practice helped them gain new skills in twirling weights which is the first step in fire twirling. This activity demonstrated the importance of mindset and self-talk when faced with new challenges and how to better manage challenges in the future.

Mindfulness is a way of viewing the world from a new perspective, how others interact with you and your choices in how you respond or react. During the mindfulness workshop, the attendees gained an understanding of the impact of mental clutter, distractions, stress, and worked on strategies to alter how they see things, which influences their choice in how they react or respond.

Letting go and moving to the rhythm of an African drumming circle they quickly picked up the rhythms and beat. Following the call and response pattern of the Drumbala leader they sounded powerful when joining the communal beat of call and response.

Each one chose to share a part of their own story with the group, making themselves vulnerable, moving others to view their life a little differently, and positively.

Our next Beyond Epilepsy Youth Conference is being held in Newcastle in September 9-10 2023, open to 16-26 year olds living with epilepsy in the Greater Hunter Region who would like to gain new skills and strategies in managing the impact that epilepsy has on their lives, wanting to meet others and share their story.

Meet others with epilepsy, hear from professionals and have a whole lot of fun! Staying at the Mecure in the heart of Wagga Wagga, this two-day event gives you the chance to hear about topics such as managing your own epilepsy, techniques to look after your mental health and share your own story. We’ll throw in some fun activities, great food and time to get to know each other.

Epilepsy specialist nurses will be present at all times.

Priority will be given to those living or seeing specialists in the Riverina/Murrumbidgee region, however, we encourage all to register interest.

Places are limited, to register your interest email 

Alex: It was a really positive experience. I got to make some wonderful friends and meet some new people who could relate with me on a lot of things, and I found it really useful. I would have stayed a week if I could! I’d definitely recommend going.

Indi: It was a chance to create new connections, build a support network, have relatable conversations. I’d definitely recommend going if you are thinking about it – it is a really safe space.