Edition 79, 2026

Hi Friends,

 A Message from the CEO 

Fifty years ago, someone chose to begin.

Today, we're asking a handful of Tasmanians to choose the next fifty.

Two-year-old Mahlie doesn't know she stood before a national Senate Inquiry in Canberra last week.

She doesn't know her mum's courage may help change epilepsy care across Australia. She simply knows she wants to sing nursery rhymes, wear gumboots on the wrong feet with a tutu and make her 3 siblings laugh.

Her mum, Dannielle, knows something different.

She knows what it feels like to watch your child have 52 seizures in a single day.

She knows what it feels like when promised referrals don't arrive, appointments take too long and answers are impossible to find.

And she knows what it feels like when someone finally picks up the phone and says,

"We'll help you."

Not because the system sent her.

Because she found Epilepsy Tasmania.

For fifty years, families like Dannielle's have found us, sometimes in the middle of the night, sometimes after a first seizure, sometimes when everyone else has run out of answers.

For fifty years, because generous Tasmanians believed no family should face epilepsy alone.

Today, we're asking a new generation to make that same commitment.

The Purple Partners Circle

As we celebrate our 50th Anniversary, our greatest hope isn't simply to finish this financial year well. It's to ensure we're still answering that phone in another fifty years.

We're looking for just 50 founding Purple Partners—people prepared to invest $50 or more each month.

Fifty people.

Fifty dollars.

Fifty years of impact.

A monthly gift gives something a once-off donation never can.

It gives certainty. It means when another frightened parent calls tomorrow, next month or next year, we're already here.

It means Emergency Management Plans can be developed within a timely manner.

It means families receive expert advice when they need it most.

It means our advocacy continues until Australia's epilepsy system works the way every family deserves.

Most importantly...

It means another child like Mahlie never has to wait for someone to care.

You can help today.

If you're in a position to make an End of Financial Year gift, thank you.

Your tax-deductible donation before midnight today 30 June,  will immediately help families across Tasmania.

If Epilepsy Tasmania has touched your life—or you simply believe every Tasmanian family deserves somewhere to turn—we invite you to become one of our 50 Founding Purple Partners.

Together, we'll make sure that fifty years from now, another family in crisis still hears those same words:

"We'll help you."

Every conversation, every act of kindness, every shared story and every person who stands with us helps create a community where people living with epilepsy are seen, supported and never forgotten.

Together, we are building a future where no one faces epilepsy alone.

Warmest wishes 

Paul Quilliam
CEO, Epilepsy Tasmania

Senate Inquiry Update 

Thank you to everyone who helped make Australia's first Senate Inquiry into Epilepsy possible. The Inquiry has now completed its public hearing, with over 400 submissions received by families, clinicians, researchers and organisations, helping create the most comprehensive national conversation on epilepsy ever undertaken.

Epilepsy Tasmania was proud to support people across Australia to engage with the Inquiry and appear before the Committee, alongside Epilepsy Australia, at the public hearing.

We now await the Committee's final report and recommendations, expected later this year. This report will inform future policy discussions about epilepsy care, support, research and national coordination.

View the Programme from 26 June 2026: 

https://drive.google.com/file/d/1Gr6tPD8Hz15jiFCX6M0ggVzdimZEDEN1/view?usp=sharing

View the Day's Proceedings on 26 June 2026:

 https://www.youtube.com/watch?v=sz5KcfvumMo

Track the Inquiry:

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

Read Tassie Mum Danielle's speech to the Senate:

https://drive.google.com/file/d/1sruInYRP8-3wo5E0ZgOOdE_8tP8r5QN-/view?usp=sharing

Do you have 2 minutes?

Your feedback is important to us and could win you the Prize Package below.

https://www.surveymonkey.com/r/5ZB2BH2

Thank you for enabling us to better serve you

Would you like to help improve support for people using dietary therapy for epilepsy?

Monash University researchers are inviting adults living with epilepsy, family members, carers, support people and dietitians to take part in an important study exploring the supports that help people follow dietary therapies, such as the ketogenic diet.

If you are over 18 and have experience with dietary therapy for epilepsy, either personally, as a carer, or professionally as a dietitian, your voice and experiences could help shape future supports for individuals and families living with epilepsy.

By sharing your insights, you can contribute to research that aims to better understand what works, what challenges people face, and how support can be improved for our community.

If you would like to take part in this Monash University study, please see the flyer below for further information and details on how to participate.

Download the Epilepsy First Aid Poster for Your Workplace

Place it in prominent positions around your workplace for both staff and customers.

Epilepsy Tasmania is a not-for-profit community organisation improving the quality of life of Tasmanians with epilepsy, and those around them, through education, coordination and support.

“As scientists, we know that each increment in knowledge, every marginal gain, when added together can make big differences to the lives of people with epilepsy.“  —  Professor Sameer Zuberi