Australian Epilepsy Project - AEP

27/03/2026

More than a Moment 💜

On Thursday evening, our AEP Strategy & Government Affairs Lead, Rebecca Forgasz Forgasz, Amanda Anderson, Participant & Lived Experience Lead, and Dimitra Kouiroukidis, Executive Assistant attended the Shades of Purple annual charity dinner hosted by the Epilepsy Foundation of Australia.

It was an evening that powerfully reminded us that epilepsy is more than a moment, more than seizures alone. It’s the daily, often invisible strength, resilience, and courage shown by individuals and families every single day.

We were deeply moved by the lived experience stories shared by siblings Hamish and Alice Macmillan, alongside their neurologist, Professor Mark Cook AO. Their honesty and insight highlighted the realities that extend far beyond what is seen.

Rheana Nation, epilepsy advisor, delivered a heartfelt and impactful speech, bravely sharing her experience of SUDEP following the tragic loss of her son, Sam, a moment that left a lasting impact on everyone in the room.

The evening was beautifully brought to life with performances from Gemma Hollingsworth, and an exciting live auction hosted by Andrew Macmillan, which exceeded its fundraising goal 👏

A special thank you to Nicole Coulthard and the wonderful Epilepsy Foundation team for hosting another incredible Purple Day event.

An inspiring night of connection, awareness, and impact and a powerful reminder to recognise the unseen strength behind every journey with epilepsy 💜

The Florey Institute of Neuroscience and Mental Health

27/03/2026

Meet Emma Beildeck and Henry Johns.

My name is Emma, and I’m a Clinical Coordinator on the Australian Epilepsy Project. I was diagnosed with epilepsy as a young teenager and was fortunate to outgrow it. I went on to finish high school, complete university, and build a full life, though there was always a quiet “just in case” in the back of my mind.

I met my partner Henry when we were 18 and 19. That “just in case” became real in my mid-20s when my epilepsy returned. It was scary, and my seizure control deteriorated, adding unexpected challenges to our relationship.

Henry stepped into a caring role, helping with medications, driving me around (until I get my license back!), taking on extra responsibilities, and supporting me through hospital visits. It wasn’t easy for him, especially not always being there when seizures happened, often hearing about them second-hand. But over time, we found our rhythm.

As cringey as it sounds, I feel incredibly lucky to have Henry. Epilepsy doesn’t define us, it’s just something we navigate together.

Meet Henry, AEP Bioinformatician

When Emma and I met, she was seizure-free, and her epilepsy felt like a distant possibility. That changed when she had her first seizure again, I wasn’t there, and the drive home was filled with worry.

I remember thinking this likely meant ongoing seizures and a very different future for both of us. While I’d been around chronic illness before, I knew this journey could be long and uncertain.

There were many moments of fear, often confirmed by calls from others when Emma had seizures. I wasn’t a medical professional, so my role was to support her in continuing to live the life she wanted.

That experience brought anxiety, but also perspective. Joining the AEP team was incredibly meaningful, being surrounded by people dedicated to improving the lives of those with epilepsy, like Emma.

When her epilepsy became drug-resistant, it was difficult for both of us. I tried to be a steady source of support, but what meant just as much was Emma supporting me, recognising that this journey affected us both.

We have just celebrated 12 months of seizure freedom. I’m incredibly proud of Emma’s perseverance, and it’s been an honour to support her. It’s equally meaningful to contribute to research through the Australian Epilepsy Project, helping others on similar journeys.

The Florey Institute of Neuroscience and Mental Health

25/03/2026

Today is Purple Day 💜 A global movement raising awareness, reducing stigma, and supporting those living with epilepsy.

We’re honoured to share our Participant and Lived Experience Lead, Amanda’s, story alongside her parents’ perspective, a journey of resilience, family, and hope.

Amanda’s Story

I was diagnosed with epilepsy in 2003, and at first, I didn’t fully understand what it would mean for my life. What I quickly learned was how relentless and unpredictable it could be.

My seizures were frequent and uncontrolled for years. They weren’t always dramatic, often I would pause mid-conversation, lose awareness, or feel disconnected from the world around me. It was exhausting and, at times, incredibly isolating.

The hardest part was the lack of control. I never knew when a seizure would happen, and that uncertainty shaped how I lived my life.

Becoming a parent while experiencing daily seizures was one of my greatest challenges. It pushed me to my limits, but it also showed me a strength I didn’t know I had.

I was never alone. My family and my husband, James, supported me through everything. When surgery became an option, it felt like both a risk and a lifeline.

It changed everything.

With my seizures now controlled, I’ve been able to truly be present as a parent, grow my family, complete my Bachelor of Psychology, and build a career in epilepsy research, supporting others on a similar journey.

I’m proud not just of where I am today, but of everything it took to get here.

Peter and Christine's Story: Amanda's parents

When Amanda was diagnosed in 2003, we felt overwhelmed by fear and uncertainty. The hardest part was the unknown, not knowing what each day would bring.

Over the years, we watched her experience frequent seizures, moments where she would pause, stare, and lose awareness. It was deeply worrying, and often we felt helpless.

Throughout the medical journey, we navigated both public and private care, prepared to do whatever it took, including paying for answers for our daughter. In the end, those answers came through the public system, and for that, we are forever grateful.

When surgery was suggested, we felt both hope and fear. The day of the operation was incredibly difficult, and the waiting was unbearable, Mum was a nervous wreck. Recovery had its challenges, and being physically apart during parts of her treatment made it even harder.

But today, what we feel most is pride. Pride in Amanda’s strength and resilience. Pride in everything she has overcome. And pride in the life she has built, her family, her career, and her determination to give back.

To other parents on a similar journey:

✨ Be supportive

✨ Stay hopeful

✨ Believe in the future

There is hope. 💜

The Florey Institute of Neuroscience and Mental Health

24/03/2026

Meet Evie, one of our clinical coordinators for the Australian Epilepsy Project (AEP) and her sister, Rosie who lives with epilepsy.

Evie’s Story

Like hundreds of thousands of others around the country, my family has personal experience with epilepsy. My twin sister, Rosie, was diagnosed with epilepsy when she was 12 years old after having seizures as a young child. Her seizures were short episodes where she blanked out, sometimes in the middle of talking or thinking, and we called them her “moments”, not thinking much else of it. When we started high school, we had to wake up early to catch the train, and that was when the “moments” started happening more frequently. After a trip to the GP, she was referred to a neurologist and swiftly diagnosed with epilepsy. Like many other people with epilepsy, it took a while to find the right combination of medications to manage her seizures, but fortunately she has now been seizure free for several years.

From Rosie’s experience I know that epilepsy is often an invisible condition and more common than most people realise. There are so many types of seizures, all presenting and impacting people in different ways. I’ve also seen that there can be hidden challenges or stigma that isn’t always obvious.

Having epilepsy means going through lots of tests, but often that doesn’t result in answers. For instance, we’re not sure why Rosie gets seizures. It’s likely a result of a combination of genes that she was born with, but the exact reasons are a mystery. As fraternal twins we share about 50% of our DNA, and so I’ve always wondered why she is affected but others in the family are not. I know for many other people with epilepsy, there remains similar questions, and it was one of the reasons I was motivated to be involved with the AEP research.

I’ve now been working with the AEP for almost 4 years, and it’s been a great joy to work on a project that is doing such important, valuable work. In my role as a clinical coordinator, I have had the opportunity to meet hundreds of people living with epilepsy as well as their families. It’s a privilege to hear about each person’s journey and know the AEP is giving access to testing that they might otherwise not receive. I also hope that future research from the AEP dataset will help the lives of even more people living with epilepsy.

The Florey Institute of Neuroscience and Mental Health

24/03/2026

At the Australian Epilepsy Project, we’re incredibly fortunate to have team members who live with epilepsy themselves, or who support someone close to them who does. 💜

For many of our staff, the work they do isn’t just professional, it’s deeply personal. Their lived experiences bring passion, empathy, and a powerful sense of purpose to everything we do, and they understand first-hand the real impact our work can have for people living with epilepsy.

This week, we’ll be sharing stories from members of our team whose lives have been touched by epilepsy. Through their experiences, we hope to highlight the strength, resilience, and dedication that drives the work of the Australian Epilepsy Project.

Stay tuned as we share their stories throughout the week. 💜

The Florey Institute of Neuroscience and Mental Health

23/03/2026

What a memorable night for the Australian Epilepsy Project 💜

Our Executive Lead, Anton, and Participant & Lived Experience Lead, Amanda, were honoured to attend the Epilepsy Action Australia Annual Gala in Sydney on Friday evening.

The night was a powerful reminder of why the work we do matters. Hearing directly from ambassadors, families, and advocates brought a depth of perspective that goes far beyond the everyday and Dr Parrat beautifully captured the critical goals in treatment and advocacy.
We extend our heartfelt thanks to the incredible speakers who shared their stories with such openness and courage. Matt Preston, Nikyah Hutchings, Lila and her dad Alex Wadelton, and Paul Wade OAM. Your voices deeply moved the room and reinforced the importance of continued advocacy, research, and support.

From meaningful conversations to genuine moments of connection (and a little fun along the way), it was an inspiring evening dedicated to strengthening a community committed to improving outcomes in epilepsy.

A sincere thank you to Carol Ireland and the entire Epilepsy Action Australia team for your tireless work in bringing together such a special event, and for your ongoing advocacy and support for the 1 in 26 Australians diagnosed with epilepsy in their lifetime.

We’re proud to stand alongside you in this important work.

The Florey Institute of Neuroscience and Mental Health
Epilepsy Action Australia

17/03/2026

🧠

What an incredible two days at last week’s Melbourne Epilepsy Meeting! Inspiring updates from leading researchers and clinicians, including a significant contribution from several of the AEP team, made for a truly impactful event.

AEP highlights included:
• Encephaloceles - classification and prediction of epileptogenicity - Prof. Graeme D Jackson
• Advanced imaging paradigms for epilepsy diagnosis - Dr David Vaughan
• Functional connectomics for epilepsy prediction - A/Prof. Mangor Pedersen
• Language functional magnetic resonance imaging - automation and delivery at scale - Dr Chris Tailby
• Polygenic risk in epilepsy - the Australian Epilepsy Project experience -Henry Johns
• Overlapping genetic markers of epilepsy, chronotype, and sleep - Dr Karen Oliver PhD
• Neuropsychology: measuring the outcome of brain disorders - Dr Jodie Chapman
📖 Read the publication: https://link.springer.com/article/10.1007/s00415-026-13732-1
• Towards precision medicine: individualised white matter abnormality detection in epilepsies - Dr Philip Pruckner
• Structural MRI biomarkers for predicting seizure recurrence after a first unprovoked seizure - Dr Suyi Ooi
• Health economics of epilepsy - Professor Zanfina Ademi and Gopisankar MG

Great discussions, valuable insights, and exciting momentum across the field. Looking forward to continued collaboration and progress in epilepsy research!

The Florey Institute of Neuroscience and Mental Health

16/03/2026

The Australian Epilepsy Project welcomes the announcement that the Senate Community Affairs References Committee will hold an inquiry into Epilepsy in Australia, reporting by 10 September 2026, with submissions closing on 15 May 2026.

This is an important milestone for the estimated 266,000 Australians living with epilepsy. A Senate inquiry ensures that the experiences, challenges and needs of the epilepsy community are heard at the highest levels of government.

As a national research initiative, the Australian Epilepsy Project supports efforts that bring greater attention to epilepsy and help inform better care, policy and support for people living with the condition.

In the lead-up to International Purple Day, we encourage the community to stay engaged with this process and help ensure the voices of people with epilepsy, their families and clinicians are represented. 💜

Learn more about the Inquiry and how to make a submission here: https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia

The Florey Institute of Neuroscience and Mental Health

09/03/2026

The Australian Epilepsy Project was honoured to be part of the recent EmpowerHER Epilepsy Forum held on Saturday, hosted by Epilepsy Action Australia in partnership with Australian Women with Epilepsy.

Held in Darling Harbour, Sydney, and joined by women attending online from across Australia, the forum brought together clinicians, researchers and people with lived experience to share knowledge, perspectives and support for women living with epilepsy.

With International Women’s Day on Sunday, the weekend was a powerful reminder of the importance of amplifying women’s voices in health, research and advocacy.

AEP’s Participant and Lived Experience Lead, Amanda Anderson, presented on the work of the Australian Epilepsy Project and also joined the lived experience panel, sharing insights about the importance of research, collaboration and ensuring the voices of people living with epilepsy are at the centre of future advances in care.

With Carol Ireland as MC, the forum featured an exceptional lineup of guest speakers and lived-experience voices including Dr Kaitlyn Parratt, Danielle Heaven, Nikyah Hutchings, Indie Kelly, Emma Copeman, Susan Don, Dr Zoe Thayer, Milena Gandy, Dr Ella Stephens, Dr Emily Sutherland, Dr Alison McLean and Lisa Todd. Their expertise and perspectives helped create an honest, informative and empowering conversation about the many aspects of women’s health and epilepsy.

We extend our sincere thanks to Epilepsy Action Australia and Australian Women with Epilepsy for the invitation and for creating such a thoughtful and empowering space for learning, discussion and connection.

Events like this play a vital role in bringing the community together and strengthening the shared mission to improve the lives of people living with epilepsy. 💜

The Florey Institute of Neuroscience and Mental Health

06/03/2026

Real impact. Real people. Real hope.

At 42, Wendy was working as a nurse in a regional private hospital when she experienced her first seizure. What followed were 11 incredibly challenging years marked by frequent and often daily seizures.

Despite being prescribed numerous medications, nothing worked. In 2017, she was admitted for video EEG monitoring and even had a seizure while under observation, yet no cause for her epilepsy could be identified.

After more than a decade without answers, Wendy came across the AEP on Facebook in 2024 and submitted an expression of interest. Our team connected with her neurologist, who referred her into the project.

Using the AEP’s unique MRI sequencing protocol, we identified multiple temporal encephaloceles, which is a potentially curable cause of epilepsy that had previously gone undetected.

Wendy has undergone further monitoring and detailed investigations to assess her suitability for surgery. We’re pleased to share that she has now been scheduled for Stereoelectroencephalography (SEEG), a minimally invasive surgical procedure, this August.

For 11 years, Wendy lived without answers. Today, she has a possible path toward seizure freedom.

This is why the AEP exists to uncover causes of epilepsy, change clinical pathways, and give people back their futures.



The Florey Institute of Neuroscience and Mental Health

01/03/2026

It’s March – let’s Make March Purple 💜

Purple is the official colour of epilepsy, and March is the month we recognise the 270,000+ Australians living with epilepsy, along with their families, carers and communities.

At the Australian Epilepsy Project (AEP), we are on a mission to change the lives of people living with epilepsy. We are seeing real-life impact through earlier diagnosis, advanced imaging, and access to care that can be life changing.

Throughout March, we’ll be sharing life changing stories of impact, important research, as well as an exciting announcement!

💜 Meet AEP participant, William.

William Campbell, a 26-year-old university student, was referred to the AEP in January 2023 after being diagnosed with temporal lobe epilepsy.

Since the age of 12 or 13, William had experienced episodes described as “dissociative events.” Over time, they intensified to as many as three per day. He had also recently experienced his first tonic-clonic seizure.

Previous MRI scans had returned normal results. But under the AEP’s advanced MRI testing protocol in February 2023, an abnormality was detected, right hippocampal sclerosis.

That finding changed everything.

It opened the door to surgery and the possibility of a cure.

In November 2024, less than two years after his diagnosis, William underwent brain surgery, a right temporal lobectomy. He has been seizure-free ever since.

This is the difference access can make.

The AEP is providing national access to advanced testing that is often only available in tertiary hospitals when surgery is already being considered. Earlier detection means earlier options and for some, the chance to live seizure-free.

This March, help us Make March Purple 💜

Together, we can change what’s possible for people living with epilepsy.

The Florey Institute of Neuroscience and Mental Health

23/02/2026

At the Australian Epilepsy Project, we’re building national infrastructure to deliver precision medicine for epilepsy.

By implementing a serverless MRI processing platform on Amazon Web Services (AWS), we’ve:

✅ Reduced MRI processing time from 25 to 20 hours per participant
✅ Lowered compute costs by over 35%
✅ Enabled secure, scanner-to-cloud DICOM ingestion nationwide
✅ Streamlined workflows for clinicians and researchers
✅ Scaled reliably across 1,500+ participants in 5 states

Using services such as AWS Health Imaging and Amazon Elastic Container Service, we’ve created a secure, scalable, and cost-efficient neuroimaging pipeline that helps deliver faster insights to clinicians and ultimately better outcomes for people living with epilepsy.

Precision medicine at national scale is no longer aspirational, it’s operational.

Learn how a serverless MRI pipeline on AWS is accelerating medical imaging workflows and insights. 👩‍⚕️📊
👉 Read the blog post here: https://aws.amazon.com/blogs/publicsector/building-a-serverless-mri-pipeline-for-precision-medicine-on-aws/

The Florey Institute of Neuroscience and Mental Health
Amazon Web Services

The Australian Epilepsy Project (AEP) is transforming epilepsy diagnosis and care across Australia. The AEP team faced a daunting challenge: processing and analyzing 20-hour magnetic resonance imaging (MRI) workflows for participants and clinicians scattered across the country. Their solution—a se...