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Volunteering for the AEP: Damien's story

February 23, 2024
AEP team member

Damien volunteered for the Australian Epilepsy Project after his partner, Rachel, who has epilepsy, became a participant. 

As a volunteer, Damien took part in an online neuropsychology assessment and visited the Melbourne Brain Centre, where he had an MRI brain scan.  

The data from Damien’s testing will contribute to our control group dataset, which is critical for a research study as it forms a comparative baseline to the general study participants. For the AEP, the control group dataset will help our investigators develop techniques to improve epilepsy diagnosis and treatment.  

We asked Damien to tell us about his experience as an AEP control group volunteer. Here’s what he had to say… 

What is your understanding of the benefits the AEP can provide to a participant?  

Simple, you can change people’s lives as you have done for us. You assisted by providing us with information, helped us to understand and balance risks and hopefully help many more people in situations like ours. 

How did you find the neuropsychology testing? 

It was fun, not something you do every day.

Was there a particular test you found interesting/fun? Why?

The problem-solving tasks were fun.  Having to think about different things to my normal everyday tasks made it enjoyable.

Did you find anything surprising about the tests/elements of the tests? 

I was a little nervous not knowing what I would be asked to do, but I feel I performed better than I expected.

What would you say to encourage others to sign up as Control Group participants? 

It’s simple, fun, interesting and can help change other people’s lives. In this messy world [why not] take a small amount of time and help people you have never met. 

 

Do you want to become a volunteer for the AEP? Register for your interest here (please note: the link takes you to a (through a series of screens) form flow to check your eligibility and connects you with our clinical trials team. You will be asked to enter details such as name and address via our secure platform – we do not keep any data associated with you if you do not qualify as a volunteer). 

 

AEP Participant: Gary Alway

Gary has been living with epilepsy for almost three decades. In his early 20s his epilepsy was fairly-well managed with medication, and his seizures were rare. But then everything changed. He began having multiple seizures and blackouts every day, culminating in a car crash nine years ago, caused by a seizure.

AEP Participant: Fiona Waugh

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.”

Meet the AEP team: Elliot Brooker

Elliot is a valued member of the AEP Neuropsychology team and is responsible for conducting telehealth neuropsychology assessments for AEP participants and control group volunteers.