Australian Epilepsy Project - AEP

- the theme of this year's National Reconciliation Week, is a time for all Australians to reflect on our shared histories, cultures, and achievements, and to take action for a more just and equitable future for all.

Together, we can foster understanding, respect, and reconciliation. Every step counts towards a more unified Australia, .

For more info and resources head to www.reconciliation.org.au

John experienced his first seizure at 47.

Diagnosed with late-onset epilepsy and struggling to understand why me, and why now, lead him to embark on a mission to provide resources and support for others facing a similar life-path.

He, and wife Natasha, have created a website and Facebook group (BrainEactz) dedicated to adults who are affected by late-onset epilepsy, establishing a centralised hub of connection and support, and hopefully helping to alleviate for others, some of the misconceptions and stigma that John experienced in his epilepsy journey.

Read his story… https://ow.ly/BnZq50RWg7T

https://www.braineactz.com

Epilepsy WA

Don’t forget to grab your tx to this wonderful event supporting women with epilepsy. 🙌

It's National Volunteer Week. 🙌

A chance to give thanks to the many people that give their time and energy to volunteer. 💜

There's in the world of volunteering.

Whether you are drawn to environmental causes, community outreach, education, health conditions or beyond, there is a place where your unique skills and interests can flourish.

At the we are very grateful to the many volunteers who have joined our research study's control group, assisting us to improve the lives of the 1 in 25 Australians who live with epilepsy. THANK YOU!

If you are also interested in contributing to epilepsy research and helping Australians who are experiencing seizures, consider volunteering for the AEP.

Learn more: https://www.epilepsyproject.org.au/participants-volunteer





The Florey Institute of Neuroscience and Mental Health

Mother’s Day is a chance to recognise and show appreciation for mothers and mother figures everywhere.

Our SA Lived Experience Ambassador, Ned Travers, shares some insights into the beautiful bond he has with his mum, Carolyn.

Read his responses here: https://ow.ly/oMjG50RA2Aq 💜



The Florey Institute of Neuroscience and Mental Health

Happy Mother’s Day to all mothers and mother figures.
Today and every day, we thank you. 💜

and AEP Participant, Sam Emslie, shares what her mum's love and support throughout her journey with epilepsy has meant to her.

What is your favourite thing about your mum?
I absolutely love how Mum truly loves every single one of us [her children] equally. Mum doesn’t have favourites. In my eyes, she’s the best Mum in the world. ❤️🤗

How integral has your mum been throughout your epilepsy diagnosis, testing and treatment?
Extremely! She’s been by my side for every appointment and hospital stay, everything.

What’s the best piece of advice or life lesson your mum has taught you?
That we don’t know what the future holds. That researchers are constantly searching for a cure for epilepsy. That my drug just hasn’t been made yet. That it’s ok to feel or get upset – to get it off your chest.

What three words would you use to describe your mum?
Kind. Gentle. Loving

If you could gift your mum anything this Mother’s Day, what would it be?
A trip overseas, with my family and me.


The Florey Institute of Neuroscience and Mental Health

'I’ve Got This! Owning My Epilepsy' is a podcast series that delves into the experiences and challenges of young adults living with epilepsy.

Rosie and James (two such young adults), team up with neurologists Laureate Professor Ingrid Scheffer and Dr Kaitlyn Parratt to share their insights and answer your questions about epilepsy in this eight-episode series.

A really wonderful and insightful series. Read more and download the podcast here: https://ow.ly/T1Nx50Ry8eY




The Florey Institute of Neuroscience and Mental Health

Meet team member, Chath.

You may have met Chath during your medical history or follow-up interviews, as a participant of the AEP.

Clink the link for an insight into what her ideal weekend involves, her favourite cuisine and her current streaming recommendations.
https://ow.ly/6VRF50Rx1mv




The Florey Institute of Neuroscience and Mental Health

Bruce experienced his first seizure later in life.

It occurred during the night leaving him completely unaware of what was happening. He was initially told by doctors it was most probably a one-off event.

Fast-forward a few months and Bruce experienced three seizures in one day and was again, admitted to hospital. He was made aware of the Australian Epilepsy Project (AEP), became a participant and post the AEP testing, received confirmation of a late-onset epilepsy diagnosis.

Read his story and experience as a participant of the Australian Epilepsy Project. https://ow.ly/bolT50RlRjb

Find out if you're eligible to join the AEP and receive access to advanced testing, usually only available in a research setting. https://ow.ly/yZjO50RlRja



The Florey Institute of Neuroscience and Mental Health

Gary was first diagnosed with epilepsy almost three decades ago. He has developed "an inner strength to keep going. And I have learnt that you have to keep living the best you can."

Gary recently participated in the Australian Epilepsy Project to receive access to advanced testing (MRI, neuropsychology and genetics) via our national network of specialist AEP Hubs.

Read his story here: https://ow.ly/lCr650RiHbV

Despite the impact that epilepsy has had on his life over the years, Gary is a talented photographer who creates beautiful mood-provoking images of people and places. Check out his work on instagram

To find out if you are eligible to participate in the Australian Epilepsy Project visit our website: https://ow.ly/cSrn50RiHbU




The Florey Institute of Neuroscience and Mental Health

Fiona didn’t experience her first seizure until 34-years-of-age and after a further two tonic clonic seizures in as many days, she was diagnosed with epilepsy. “Since diagnosis I’ve remained drug-resistant with a high frequency of seizure activity. But I’ve always had a desire to try and get on top of it, which has led me to make some big treatment decisions over the years.”

She shares her journey with epilepsy and experience as a participant of the Australian Epilepsy Project. https://ow.ly/ujka50RcMTP

Find out if you're eligible to participate in the Australian Epilepsy Project and receive access to advanced testing (MRI, neuropsychology, genetics) to guide individualised epilepsy diagnosis and treatment. https://ow.ly/iGu550RcMTO




The Florey Institute of Neuroscience and Mental Health

Not a day goes by when Artificial Intelligence (AI) isn’t grabbing the headlines somewhere in the world.

We spoke to neuroscientist and Australian Epilepsy Project AI Lead, A/Prof. Mangor Pedersen on the use of AI in the AEP and the implications of the World Health Organisation's (WHO) recent publication addressing regulatory considerations on using AI for health.

Read the full article https://ow.ly/r8Fj50Ra6lT




The Florey Institute of Neuroscience and Mental Health

Maureen's daughter was diagnosed with epilepsy at 14-years-of-age. "I know the pain… the disappointments, the lack of independence, [and] the physical and emotional wounds of epilepsy... but most of all, I have the privilege to know the brave young woman I am proud to call my daughter."

Read her story: https://ow.ly/4O1z50R77q1

If you would like to volunteer for the Australian Epilepsy Project (AEP) and help shape the future landscape of epilepsy diagnoses and treatment for thousands of Australians living with epilepsy, please sign up here: https://ow.ly/vrqM50R77q0




The Florey Institute of Neuroscience and Mental Health

Meet team member, Elliot.

Elliot is a Research Assistant and valued member of the AEP's Neuropsychology team - responsible for conducting neuropsychology assessments via our telehealth program.

Head to our website for the lowdown on who he'd most like to meet, his all-time favourite meal and what he considers the ideal weekend.
https://ow.ly/3Jnt50R3Rkt




The Florey Institute of Neuroscience and Mental Health

AEP team members were thrilled to attend the recent Epilepsy Action Australia ‘Illuminating Hope’ Gala Dinner - a signature event on their calendar.

It was a wonderful celebration and coming together of the epilepsy community, from medical and research colleagues to supporters and carers, alongside the many amazing epilepsy warriors.

Thank you Epilepsy Action Australia for hosting such a stellar event, raising awareness and funds to help support the many Australians impacted by epilepsy.

We can’t wait for next year’s event!






image: AEP Lived Experience Ambassador and Participant Experience Lead, Amanda Anderson with Epilepsy Action Australia Lived Experience Ambassador, Councillor Mindy Russell

Today is PURPLE DAY! 💜
A global initiative that is dedicated to raising awareness, dispelling myths, and increasing support for people living with epilepsy.

Founded in 2008 by then nine-year-old Cassidy Megan of Nova Scotia, Canada, the Purple Day concept was born out of Cassidy’s own struggles with epilepsy, her motivation to get people talking about the condition, and her desire to let those impacted by seizures know that they are not alone.

This year, epilepsy organisations around Australia, backed by official sponsor Jacaranda Finance, have joined together to create the campaign and the Australian Epilepsy Project proudly supports their campaign because...

Every 33 minutes an Aussie life is turned upside down by epilepsy.

Please help turn things around and build an Australia where people with epilepsy feel safe, supported, and included.

How can you Make March Purple in 2024? You can…
💜 Help turn things around with the Upside-Down Challenge
💜 Tell epilepsy to GET MUCKED with the Purple Muck Challenge
💜 Visit a purple illumination in your city
💜 Or fundraise for your local epilepsy organisation

To find out more about getting involved head to https://makemarchpurple.org.au/

Dr Suyi Ooi, one of the AEP’s talented PhD students presented this morning for Day 2 of Epilepsy Melbourne at The Florey Institute of Neuroscience and Mental Health. Her fascinating research uses MRI to improve prediction of seizure recurrence after someone has experienced their first seizure.
We are thrilled you’re part of the AEP team and look forward to seeing where your research takes you.

Yesterday afternoon's 'Data Blitz' and Poster Session at featured a number of the AEP's talented Research Assistants (RA) and PhD students. Congratulations to RA’s Loren Lindenmeyer and Molly Ireland, and PhD students, Karen Oliver, Leila Nategh, Vicky He and Amaury Pelzer. We look forward to seeing your research published and the fruition of all your hard work.



The Florey Institute of Neuroscience and Mental Health

Yesterday, was Day 1 of Epilepsy Melbourne 2024 at The Florey Institute of Neuroscience and Mental Health. Great to hear from leading researchers in epilepsy including AEP Team Lead, A/Prof. Heath Pardoe, Dr David Vaughan, and Dr Chris Tailby, presenting research across the use of AI to assist with lesion detection, the clinical impact of pre-surgical imaging, and the functional imaging of language, what it can tell us and how epilepsy may influence language representations.

The Australian Epilepsy Project (AEP) continues to grow, with the addition of NSW and Qld sites to the AEP Hub network.

We are celebrating the recent opening of our first regional scanning site at the John Hunter Hospital, Newcastle, as well as AEP Hub: The Mater, Brisbane.

Both hubs are now recruiting participants (and control group volunteers), providing greater access to advanced testing (neuropsychology, MRI, and genetics) for people experiencing seizures.

By providing access to advanced diagnostics and treatment pathways usually only available within a research setting, the AEP aims to provide benefits to Australians living with epilepsy from day one.

For further information and/or to check your eligibility to join the study, head to https://www.epilepsyproject.org.au/get-involved

The Florey Institute of Neuroscience and Mental Health
Mater
HNE Health

The first International Women’s Day (IWD) event was held in 1911 in Austria, Denmark, Germany, and Switzerland. Today it’s a global day that recognises women’s achievements while also raising awareness about the discrimination and inequality that still exists.

Everyone can play a part in raising awareness – at home, at work, and in the community.

When we inspire each other to value women’s inclusion we create a better world.

With that in mind, this year we have asked the male members of the AEP team to tell us about the women (historical or current) who have inspired them and why.

Click here to see what some of them shared: https://ow.ly/Pbj250QNb55



The Florey Institute of Neuroscience and Mental Health

It's MAKE MARCH PURPLE time and there is many fantastic national initiatives on at the moment, to raise awareness and support of epilepsy. 💜

Epilepsy Action Australia's Purple Day - on March 26 - is only 21 days away, and they're calling on you to join them in making a difference for epilepsy awareness.

Register today and pledge your support for the movement - creating a brighter, more supportive future for those living with epilepsy. 💪🌟

Get Involved at - https://www.epilepsy.org.au/fundraise/make-march-purple/






The Florey Institute of Neuroscience and Mental Health

Damien’s partner, Rachel, lives with epilepsy and has recently participated in the Australian Epilepsy Project (AEP). Watching Rachel experience the ups and downs of an epilepsy diagnosis and understanding that you can change people’s lives by contributing to research, were the drivers for Damien volunteering to be part of the AEP’s control group.

His and other volunteer’s contribution to the project is helping the AEP shape the future landscape of epilepsy diagnoses and treatment for thousands of Australians and will drive new discoveries and future applications of data for epilepsy today, and other brain health conditions tomorrow.

Read more about Damien's experience as a volunteer of the AEP here: https://www.epilepsyproject.org.au/post/volunteering-for-the-aep-damiens-story

You can read Rachel’s inspiring story here: https://www.epilepsyproject.org.au/post/aep-participant-rachel-parkinson

Find out more about how volunteering for the AEP will make a positive impact on others: https://www.epilepsyproject.org.au/participants-volunteer




The Florey Institute of Neuroscience and Mental Health

Congratulations to AEP Research Assistant, Remy Pugh, for having her first paper as lead-author published recently in Epilepsia Open. 👏

For key insights from the study and a link to the paper, click this link: https://ow.ly/lIsQ50QFYnU

Remy is currently completing her doctoral training in clinical neuropsychology at Monash University. Her research focuses on screening neuropsychological function in new-onset epilepsy within a First Seizure Clinic. Remy is a PhD candidate in the Epilepsy Cognition Group at The Florey Institute of Neuroscience and Mental Health.

Chloe experienced a couple of visits to hospital after falling out of bed due to seizures during her sleep. The results of her scans were inconclusive but further seizures over the next 12 months lead to an epilepsy diagnosis.

“It was very confronting to be diagnosed with epilepsy knowing it’s a life-long condition, but ultimately it gave me comfort that I had a clear path forward.”

Follow Chloe’s story and experience as a participant of the AEP here: https://ow.ly/3C4T50QEP1y.

If you, or someone you know, has recently been diagnosed with epilepsy they might be eligible to join the Australian Epilepsy Project and receive access to advanced testing (neuropsychology, MRI and genetics) that may fast-track their diagnosis and treatment pathway.

For further information on the AEP’s no-out-of-pocket-cost advanced testing, and to check your eligibility, head to our website: https://ow.ly/csGH50QEP1w





The Florey Institute of Neuroscience and Mental Health

We are delighted that the Australian Epilepsy Project’s (AEP) first health economics paper based on data from our pilot study, was recently published. Congratulations to Dr Clara Marquina and Dr Emma Foster along with AEP team members, most notably, our Health Economics Lead, Prof. Zanfina Ademi (Monash University Pharmaceutical Sciences), for this great achievement.

The paper has identified the quality of life, work productivity and care burden experienced by people living with epilepsy.

Click here to read the paper’s key insights: https://ow.ly/GAp650QEPk8




The Florey Institute of Neuroscience and Mental Health
Monash University

image: Dr Clara Marquina, Prof. Zanfina Ademi

Today is Random Acts of Kindness Day. 😃

A global initiative that encourages people to show compassion and kindness towards others and to spread positivity, altruism and goodwill in the community.

A small act of kindness is often all it takes to change a person’s day, week or possibly their life.

Research shows that the act of helping others releases endorphins and can reduce stress, anxiety and even blood pressure, and can improve our emotional well-being.

In short, doing good does you good.

There are many simple random acts of kindness that you could do today…

☕️ Pay for a stranger’s coffee

✉️Send someone a handwritten note

🐶 Walk your neighbour’s dog

🙌 Volunteer to be part of the Australian Epilepsy Project’s (AEP) control group

To find out more about volunteering for the AEP click here: https://ow.ly/sxJX50QBypw

The AEP’s control group volunteers are a vital part of our epilepsy research study. Their contribution is assisting our researchers to identify subtle changes in brain structure, function and cognition in people living with epilepsy, and develop cutting-edge techniques for improved epilepsy diagnosis and treatment planning. 💜




The Florey Institute of Neuroscience and Mental Health

Happy St Valentine’s Day. ❤️

A little-known fact about the patron saint of love is that St Valentine is also the patron saint of epilepsy (and beekeepers and Terni, in Italy).

It is not known for certain how this came about but one legend suggests that in 300 AD a bishop named Valentin von Terni freed a Roman orator’s son from an epileptic seizure.

Another theory is based on the phonetic similarity between the German word for fallen (gefallen) and ‘valen’ (valentine).

For centuries, epilepsy was known as ‘the falling sickness’ and it is likely people would have turned to a figure of hope, like Saint Valentine, when, in those days, even less was known about the causes and possible treatments for epilepsy.

On this Valentine’s Day, we send a special wish of love to everyone living with epilepsy and those that love and care for them. 💜