Australian Epilepsy Project - AEP

19/06/2026

✨ Essey’s Story

At just 20 years old, Essey has already overcome a journey that many people with epilepsy know all too well.

Her seizures began when she was 14, occurring six to eight times every week despite multiple anti-seizure medications. Although clinical investigations suggested her seizures were coming from the left temporal lobe, a standard MRI failed to identify a cause, leaving Essey and her family without answers.

Referred to the Australian Epilepsy Project (AEP) by Dr John Phamnguyen in March 2024 as part of the refractory epilepsy cohort, Essey underwent advanced MRI imaging through the project. In November 2024, the AEP MRI revealed a meningocele in the left temporal region along with 1 or 2 small encephaloceles, structural abnormalities that had previously gone undetected and was identified as the cause of her epilepsy.

With a clear diagnosis finally established, Essey was able to access epilepsy surgery at Royal Brisbane and Women's Hospital in April 2025. She underwent a temporal lesionectomy and has been seizure-free ever since.

Just over a year after being referred to the AEP, Essey went from living with frequent seizures and no clear diagnosis to having a cause identified and life-changing surgery that has given her seizure control.

Essey is now training to become a tattoo artist. She designed this tattoo two months before her brain surgery and had it tattooed two months after surgery. The tattoo features a brain with cherry blossoms on one side, and an orchid flower placed where the surgery was performed. It’s a deeply personal design that reflects her journey through epilepsy surgery, healing, and recovery.

Stories like Essey’s highlight the power of advanced imaging and early access to specialist epilepsy care, helping more Australians find answers and access treatments that can transform lives.

“Brain surgery was truly the toughest experience of my life but thanks to AEP and the Advanced MRI Imaging my family and I finally got the answers we were waiting for. When I first got asked if I wanted to do the MRI, I was very stubborn and said no, thankfully my partner convinced me to do it just by saying 'just lay there and think of everything you want to do in the future when this is all over'. Without this screening done I would still be having seizures and waiting to see if brain surgery was even possible. The AEP made my life and freedom become possible all because of a 2-hour long MRI…” - Essey

If you are interested in finding out whether you are eligible for the AEP, express your interest here and our team will be in touch.

https://www.epilepsyproject.org.au/participant-living-with-seizure

The Florey Institute of Neuroscience and Mental Health

22/05/2026

🎉CELEBRATING A MAJOR MILESTONE IN BRAIN HEALTH🎉|

✨ 🧠 AUSTRALIAN EPILEPSY PROJECT (AEP) AWARDED $30M TO TRANSFORM BRAIN HEALTH IN AUSTRALIA 🧠✨

The Australian Epilepsy Project (AEP) are thrilled to announce we have received an additional $30 million through the MRFF to expand its groundbreaking brain health platform across the Australian health system. Using AI-powered technology that combines advanced MRI, genetics and cognitive testing, the AEP is establishing a national standard of care for epilepsy, helping Australians access faster diagnosis, more personalised treatment, and better long-term outcomes.

Most importantly, we are already seeing real impact for people living with epilepsy, and our team is incredibly proud of what has been achieved so far. This funding is a real step forward for people living with epilepsy and will allow us to help many more individuals and families across Australia in the years ahead.

This funding will enable the AEP to:
• Expand access to advanced diagnostics and specialist expertise across more hospitals and clinics nationally
• Scale precision epilepsy care across Australia
• Develop future solutions for neurological and mental health conditions beyond epilepsy
• Accelerate commercialisation and international expansion of Australian-developed health technology

Chief Investigator, Prof. Graeme Jackson said:
“Digital technologies and AI can translate research into new optimised models of health care at population scale. This brings the highest standard of care to the whole population regardless of where you live, with particular impact for rural and regional Australia. This is the future.”

He added:
“The Australian Epilepsy Project has successfully established a high standard of care for epilepsy, bringing advanced research to clinical impact in a platform model that connects patients with their doctors and ongoing research.”

Executive Lead, Anton de Weger said:
“Securing this four-year federal investment allows us to move from a frontier clinical project to an established translation platform.”

“Scaling AI-enabled digital care pathways requires a multidisciplinary team spanning deep neurological science, startup and commercial acumen, clinical expertise, lived experience, data science and engineering.”

“This grant provides the precise runway needed to build innovative, regulated, automated tools that scale impact and change the standard of care for brain health, proving Australia can lead the world in health-tech commercialisation.”

Read more: https://www.health.gov.au/ministers/the-hon-mark-butler-mp/media/delivering-world-class-health-and-medical-research-for-australia?language=en

The Florey Institute of Neuroscience and Mental Health
Mark Butler MP

20/05/2026

One seizure changed everything, but access to specialist epilepsy care changed the outcome.

Through the Australian Epilepsy Project, one participant went from a first seizure to diagnosis, surgery, and seizure freedom in less than two years. Their story highlights the life-changing impact of earlier diagnosis and faster access to care.

In February 2023, life changed in an instant. After experiencing a first tonic-clonic seizure at home, witnessed by housemates who were a paramedic and nurse, the seizure lasted around two minutes and resolved before the ambulance arrived. Although alert and oriented when speaking with paramedics, parts of the experience were later forgotten, a reminder of how disorienting seizures can be.

A CT scan at a regional Victorian Hospital showed no abnormalities, but through the First Seizure Clinic at The Alfred Hospital, he was referred by Dr Emma Foster to the Australian Epilepsy Project in March 2023.

Just two months later, an AEP MRI identified the cause: a left temporal encephalocele, an abnormality that can be the cause of seizures. In January 2025, he underwent surgery to remove it and has been seizure free ever since.

From first seizure to life-changing surgery in less than two years, compared with the decades many people can wait through standard clinical pathways for epilepsy surgery. This is the power of earlier diagnosis, research, and access to specialist care.

“The speed of my diagnosis and treatment pathway through the AEP was unbelievable. I cannot thank everyone involved in my care enough, and the AEP was a major part of helping me get answers so quickly. When I hear how long many people wait for advanced testing and a clear diagnosis, I honestly do not know whether I would have had the strength to go through that same prolonged path.” - AEP Participant

The Florey Institute of Neuroscience and Mental Health

15/05/2026

📅 Applications close Monday 18 May.

📢 WE ARE HIRING!

The Australian Epilepsy Project (AEP) at The Florey Institute of Neuroscience and Mental Health is seeking an experienced Regulatory Affairs Lead to drive the regulatory strategy for our Software as a Medical Device (SaMD) portfolio.

This is a senior, hands-on role with end-to-end responsibility, from shaping intended use through to ARTG inclusion and post-market compliance, while building fit-for-purpose quality systems in a fast-moving digital health environment.

Working closely with executive, clinical, scientific, commercial, and technology leaders, you’ll play a key role in ensuring regulatory excellence supports innovation and growth.

If you’re passionate about digital health and want to make a meaningful impact, we’d love to hear from you.

👉 View and apply via SEEK: https://lnkd.in/gie_fiBU

14/05/2026

⏳ Today is the last day to have your say on epilepsy in Australia 🧠💜

A Senate Inquiry into Epilepsy in Australia has been announced by the Parliament of Australia, creating an important opportunity to help drive meaningful change.

If you’re living with epilepsy, or you’re a family member, friend, or supporter, your voice matters. Sharing your experience can help shape better care, support, and research for people affected by epilepsy across the country.

This inquiry will examine critical issues such as:

• Barriers to diagnosis and access to treatment (including location, cost, and access to neurologists)
• The impact of drug-resistant epilepsy on individuals and families
• Awareness and understanding of epilepsy in the community
• Access to support services like the NDIS
• Whether enough funding is going into epilepsy research

If you’ve faced challenges getting a diagnosis, accessing care, or navigating daily life with epilepsy, this is your chance to be heard.

We have made a submission supporting the important work of the Australian Epilepsy Project, helping transform how epilepsy is understood and treated nationwide. If anyone would like to view the AEP’s submission, you can access it here, submission number 64:

https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia/Submissions

📣 Submissions close today, 15 May 2026

🔗https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia

Even a short submission can make a real difference.

Let’s work together to improve outcomes for everyone affected by epilepsy.

The Florey Institute of Neuroscience and Mental Health

14/05/2026

For many Australians living with epilepsy, finding answers can take years, sometimes decades. But through the Australian Epilepsy Project’s advanced testing, earlier diagnosis and precision care are changing lives.

This is the story of one young man whose journey from uncertainty to seizure freedom was made possible through AEP testing, leading to life-changing treatment in less than five years, highlighting the powerful impact of early detection and precision epilepsy care.

At just 15 years old, a young man experienced his first seizure. For years, answers remained out of reach. Although his MRI was initially considered “normal,” his medical team suspected there could be more to the story.

In February 2024, he was referred to the Australian Epilepsy Project (AEP) Refractory Focal Epilepsy Cohort by neurologist Prof. Aileen McGonigal from the Mater Hospital.

Through advanced MRI conducted by the AEP in April 2024, specialists identified a previously undetected abnormality: bilateral posterior periventricular nodular heterotopia, finally providing a confirmed cause for his seizures.

That diagnosis changed everything.

In August 2024, he underwent stereoelectroencephalography (sEEG) at the Mater Hospital. Following the procedure, he remained free from focal impaired awareness seizures, with significant improvement in seizure control.

Then, in January 2026, he underwent Laser Interstitial Thermal Therapy (LITT), a minimally invasive surgical treatment that is becoming more widely available in Australia. Since the procedure, he has been seizure free.

For many Australians living with epilepsy, access to surgical pathways can take more than 20 years. From first seizure to life-changing surgery in less than five years, his journey highlights why earlier diagnosis, advanced testing, and timely intervention matter, helping young people regain independence, confidence, and quality of life sooner.

“The Australian Epilepsy Project has been incredible in helping me find a solution for my epilepsy. Their advanced MRI played a huge role in helping my neurologist identify the source of my seizures, and I’m so grateful for the support they provided. I couldn’t have done it without them” - AEP participant

The Florey Institute of Neuroscience and Mental Health

12/05/2026

⏳ 3 days to go! Have your say on epilepsy in Australia 🧠💜

A Senate Inquiry into Epilepsy in Australia has been announced by the Parliament of Australia, and this is a real opportunity to drive meaningful change.

If you’re living with epilepsy, or you’re a family member, friend, or supporter, your voice matters. Submissions are open right now, and sharing your experience can help shape better care, support, and research.

This inquiry will examine critical issues such as:

• Barriers to diagnosis and access to treatment (including location, cost, and access to neurologists)
• The impact of drug-resistant epilepsy on individuals and families
• Awareness and understanding of epilepsy in the community
• Access to support services like the NDIS
• Whether enough funding is going into epilepsy research

If you’ve faced challenges getting a diagnosis, accessing care, or navigating daily life with epilepsy, this is your chance to be heard.

We have made a submission supporting the important work of the Australian Epilepsy Project, helping transform how epilepsy is understood and treated nationwide.

📣 Submissions close 15 May 2026

🔗https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia

Even a short submission can make a real difference.

Let’s work together to improve outcomes for everyone affected by epilepsy.

The Florey Institute of Neuroscience and Mental Health

07/05/2026

⏳ 8 days to go! Have your say on epilepsy in Australia 🧠💜

A Senate Inquiry into Epilepsy in Australia has been announced by the Parliament of Australia, this is a real opportunity to drive meaningful change.

If you’re living with epilepsy, or you’re a family member, friend, or supporter, your voice matters. Submissions are open right now, and sharing your experience can help shape better care, support, and research.

This inquiry will examine critical issues such as:
• Barriers to diagnosis and access to treatment (including location, cost, and access to neurologists)
• The impact of drug-resistant epilepsy on individuals and families
• Awareness and understanding of epilepsy in the community
• Access to support services like the NDIS
• Whether enough funding is going into epilepsy research

If you’ve faced challenges getting a diagnosis, accessing care, or navigating daily life with epilepsy, this is your chance to be heard.

We have made a submission, supporting the important work of the Australian Epilepsy Project, helping transform how epilepsy is understood and treated nationwide.

📣 Submissions close 15 May 2026
🔗https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia

Even a short submission can make a real difference.

Let’s work together to improve outcomes for everyone affected by epilepsy.

The Florey Institute of Neuroscience and Mental Health

05/05/2026

📢 WE ARE HIRING!

The Australian Epilepsy Project (AEP), The Florey, is looking for an experienced Regulatory Affairs Lead to drive the regulatory strategy for our Software as a Medical Device (SaMD) portfolio.

This is a senior, hands-on role with end-to-end responsibility, from shaping intended use through to ARTG inclusion and post-market compliance, while building fit-for-purpose quality systems in a fast-moving digital health environment.

Working closely with executive, clinical, scientific, commercial, and technology leaders, you’ll play a key role in ensuring regulatory excellence supports innovation and growth.

If you’re passionate about digital health and want to make a meaningful impact, we’d love to hear from you.

👉 View and apply via SEEK: https://au.seek.com/job/91880247?tracking=SHR-WEB-SharedJob-anz-1

The Florey Institute of Neuroscience and Mental Health

28/04/2026

Have your say on epilepsy in Australia 🧠💜

A Senate Inquiry into Epilepsy in Australia has been announced by the Parliament of Australia and this is a real opportunity to create change.

If you’re living with epilepsy, or you’re a family member, friend, or supporter, your voice matters. Submissions are now open, and personal experiences can help shape better care, support, and research.

This inquiry will look at critical issues like:

• Barriers to diagnosis and access to treatment (including location, cost, and access to neurologists)

• The impact of drug-resistant epilepsy on individuals and families

• Awareness and understanding of epilepsy in the community

• Access to support services like the NDIS

• Whether enough funding is going into epilepsy research

If you’ve ever struggled to get a diagnosis, access the right care, or felt the impact of epilepsy on daily life, this is your chance to be heard.

We’ll be making a submission and supporting the important work of the Australian Epilepsy Project, which is helping transform how epilepsy is understood and treated in Australia.

📣 Submissions close 15 May 2026

https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia

Even a short submission can make a difference.

Let’s work together to improve outcomes for everyone affected by epilepsy.

The Florey Institute of Neuroscience and Mental Health

Community Affairs References Committee Date referred: 11 March 2026 Submissions close: 15 May 2026 Reporting date: 10 September 2026 Terms of Reference Epilepsy in Australia, with particular reference to: barriers to diagnosis and access to appropriate treatment options, in