Edition 71, 2025

Hi Friends,

 A Message from the CEO – 50 Years of Impact, and the Road Ahead

Over the past few months, as we prepare to celebrate Epilepsy Tasmania’s 50th anniversary, I’ve had the enormous privilege of reconnecting with people who have helped shape this organisation—past clients, clinicians, volunteers, staff, carers, board members and corporate supporters whose commitment laid the foundation for everything we do today.

These conversations have been humbling. They weren’t centred around roles or titles, but rather around people—about who they supported, who they walked alongside, and how their efforts helped change lives.

It’s been a joy to sit down over coffee and cake with our very first President, Mr Mike Jenner, and to share stories with Mr Ric Paterson, who was the MC at our very first fundraiser back in 1975—where, remarkably, the first prize in the raffle was a Toyota sewing machine!

But what struck me most was the shared theme running through every story: we made a difference. Whether it was providing epilepsy education and training, standing beside a family after a diagnosis, providing support and understanding during the challenges of living with epilepsy, or simply offering a voice of understanding—these moments matter. They become threads in the rich tapestry of Epilepsy Tasmania’s history, stitched together by compassion, community, and courage.

Our My Journey project, a collection of powerful stories and photo exhibition in previous years, is a testament to that. In every story—like Amber’s, who remembers her first seizure in primary school; or Riley, who rebuilt his confidence after losing his driver's licence due to seizures—we see the powerful impact of support, knowledge, and empathy. These are the stories that remind us why our work matters, and why it must continue.

As we approach this milestone year, we’re not just looking back—we’re investing forward, because for every story already written, there are countless more Tasmanians who will need us in the next 50 years. We want to be there for them, with the same unwavering commitment and care.

Thank you for being part of this journey. Whether you’re new to Epilepsy Tasmania or have walked alongside us from the start, your support helps us keep writing new stories of hope, strength, and change.

Warmly, 

Paul Quilliam
CEO, Epilepsy Tasmania

We are very excited to announce that Walk for Epilepsy 2025 launched on Friday 11 July. This year's theme is "Walk and Talk" - because every step is a chance to spark a conversation. Let's walk and talk to raise awareness and break down the stigma.

We can provide resources, support and information so please contact us if you would like assistance to get involved. Alternatively visit the website for more information. 

We are keen to journey with you as you take on the challenge and would love to hear your story as to why you are involved in this initiative.

Tasmanian Educational Leaders Conference 21 to 23 May Wrest Point, Hobart

The Epilepsy Tasmania Team held a trade display at the Annual TPC Conference. It was great to connect with so many Principals and schools. Some Principals had recently had training at their school. Others had just identified a student with epilepsy and were interested in finding out about the support and training options that we offer.

The Team have attended this conference for several years and find it invaluable in remaining connected to the schooling sector. We acknowledge and pay tribute to the important role they play in children and young people’s lives and are encouraged by the care and support shown to those with epilepsy and their families.

Liz: 0456 231 632 | Sarah: 0422 818 490

Together, let’s build a safer, more supportive Tasmania for people living with epilepsy.

From our Social Worker

As a social worker with Epilepsy Tasmania, I am here to assist you and your family in managing the challenges associated with epilepsy. Whether you require guidance navigating services, strategies to manage stress, or support in accessing the information and resources you need at this time, please know you are not alone. Together, we can identify the most appropriate tools to help you feel informed, supported, and empowered.

If you would like to speak with me, please phone me on 0439 439 041

Shirl – Social Worker, Education & Training 

From our Registered Nurses

Unlocking the Brain

A continuing series from Epilepsy Tasmania nurses, sharing uplifting advances in epilepsy research.

This edition of Brainwaves we bring the MoPEDE study – Multimodal Profiling of Epileptic Brain Activity via Explanted Depth Electrodes. MoPEDE is a groundbreaking new research method bringing fresh hope to epilepsy treatment.

Developed by researchers at the University of Southern Denmark and the Royal College of Surgeons in Ireland, MoPEDE bridges a vital gap in epilepsy care by combining electrical brain activity data with genetic analysis.

During pre-surgical evaluations, patients with difficult-to-treat epilepsy often have SEEG electrodes implanted to monitor seizure activity. When these electrodes are removed, they can carry traces of biological material—such as RNA and DNA.

MoPEDE uses this material to analyse gene activity at the precise locations where seizures originate. The result is a personalised molecular map of epilepsy—helping doctors identify more targeted, effective treatment strategies, particularly for patients who haven’t responded to conventional therapies.

By merging neuroscience with genetics, MoPEDE represents a promising step toward earlier diagnosis, fewer invasive procedures, and more lives lived seizure-free.

Jill – Outreach Education & Training Registered Nurse 0422 101 272

Kate - Outreach Education & Training Registered Nurse 0407 994 205

Leave a Lasting Legacy with Epilepsy Tasmania

Would you like to support Epilepsy Tasmania through a gift in your Will?
You can now write your Will online from the comfort of your home in just 15 minutes—for as little as $159.

We’ve partnered with Willed, an Australian organisation that makes end-of-life planning simple, affordable, and accessible. Their experienced team of lawyers, paralegals, and funeral consultants are here to support you every step of the way—from writing your Will, to managing probate and funeral arrangements.

By leaving a gift to Epilepsy Tasmania, you’re helping ensure we can continue supporting Tasmanians living with epilepsy for generations to come.

Start your Will today at www.willed.com.au/epilepsytasmania

Thank you for leaving a legacy of care, compassion, and hope. 

Epilepsy Tasmania Feedback Survey

Epilepsy Tasmania is a not-for-profit community organisation improving the quality of life of Tasmanians with epilepsy, and those around them, through education, coordination and support.

This survey is for anyone who has recently interacted or received services from Epilepsy Tasmania. This short survey asks a few questions about your experience and satisfaction with Epilepsy Tasmania services.

Your answers will remain anonymous. https://www.surveymonkey.com/r/5ZB2BH2

International Day of Play 11 June Launceston

It was special seeing children learn, discover and make new friends amongst all the groups that contributed their time and energies for a few hours at Door of Hope, celebrating International Day of Play.

Paul & Nerida thoroughly enjoyed interacting with the children and families (including some of whom we have supported) who had fun engaging in the play activities we had set up.

Lots of purple in our corner. 

Our CEO, Paul even managed a snapshot with the Launceston City Mayor, Matthew Garwood who as well as being an invited guest, also enjoyed the event with his family.

“Success is not final, failure is not fatal: It is the courage to continue that counts.” -Winston Churchill