CEO’s Blog

This SUDEP Action Day Join Us in Asking ‘Why?’

23 October 2017

As those with epilepsy know only too well, there are a lot of misconceptions about the condition. One of them is epilepsy does not lead to death.   Unfortunately, one tragic consequence of epilepsy can be SUDEP – Sudden Unexpected Death in Epilepsy, which is estimated to be responsible for a devastating 150 epilepsy-related deathsRead More…

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New Website and Logo Reflects ‘Take Action’ Approach

09 August 2017

During my 11 years as CEO of Epilepsy Action Australia I have been very lucky to be part of many exciting initiatives, including Purple Day and the launch of the MyEpilepsyKey resource. But I have to say that the unveiling this month of our fabulous new website and logo joins my list of significant highlights.Read More…

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Cannabis Oil and Children with Epilepsy

21 September 2016

I know there was a great deal of upset, especially amongst ‘epilepsy parents’, following comments made in an ABC Brisbane television news item on the evening of 19 September. The segment covered the story of a father who is pleading with the Queensland Government to allow his 8 year old daughter, who has a regressive neurological disorder that causes chronic multiple seizures, access to medicinal cannabis oil while she is in hospital.

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Purple Day 2016

29 March 2016

So another Purple Day has come and gone. I am reflecting on the successes, the highs and the lows, the mixed emotions that were expressed over the past few days.

I remember some years ago when I first heard there was going to be an epilepsy ‘day’ thinking “oh no, not another ‘day’. There are so many already”. As I let the possibility sink in, I actually understood that having an ‘event’ like Purple Day was very right for the epilepsy condition.

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Message to the Australian Health Minister on epilepsy and Medicinal Cannabis

03 December 2015

The Hon Sussan Ley MP
Minister for Health

Dear Minister

I write on behalf of many families in Australia who have children with devastating, medication resistant epilepsy. I also write to you on behalf of adults who have lived for many years with unrelenting seizures that have made it virtually impossible for them to lead a quality life and participate fully in their communities – a right afforded to most of us.

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