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Epilepsy Foundation of Australia

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Epilepsy Foundation of Australia

The Epilepsy Foundation is committed to improving the lives of people living with epilepsy.
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Social Media Terms of Service

The Epilepsy Foundation welcomes contributions to our social media accounts and encourages discussion related to epilepsy, our research, events and more. To ensure a safe environment for all members of our community, we ask users to abide by these Terms of Service and reserve the right to remove any content we deem inappropriate. When posting, please respect the view

s of other users and be aware that our accounts are viewed by minors (people under the age of 18). Accordingly, posts and contributions should be suitable for individuals of all ages. All material posted by users must comply with the relevant service’s Terms of Use. In addition, users may not post any material that:

• Is abusive, threatening, discriminatory or defamatory
• Is unlawful, fraudulent, misleading or malicious
• Infringes on the intellectual property rights of others
• Is offensive, obscene or otherwise inappropriate
• Is entirely off-topic or has been excessively reposted by a user
• Advertises or offers to sell any goods or services, contains spam or any other unsolicited commercial messages

We reserve the right, in our absolute discretion, to remove, untag and/or report any posts, including those that violate these Terms of Service. Users who breach these Terms of Service may be blocked from contributing. The Foundation accepts no liability for any loss arising from or in connection with users being blocked from the relevant service or the deletion of a user’s content. Comments and posts on our social media accounts made by those outside the organisation do not necessarily reflect the opinions of the Epilepsy Foundation, its employees or affiliates. The Epilepsy Foundation does not endorse this material and is not responsible for its accuracy. Please note that we cannot guarantee the privacy or security of conversations made through social media messaging apps or email. While we do our best to ensure the integrity of these platforms, if you have any concerns, please contact the National Epilepsy Support Service on 1300 761 487. The collection of personal information by the Epilepsy Foundation is governed by the Privacy and Data Protection Act 2014 (Vic) and Health Records Act 2000 (Vic) (together, Privacy Laws). The Epilepsy Foundation is committed to protecting your privacy and processing your personal information fairly and lawfully in compliance with the Privacy Laws. Please refer to our Privacy Policy for information about how we handle personal information. The Epilepsy Foundation reserves the right to update these Terms of Service from time to time.

11/06/2026

This is Maverick 💜 And yes, he has epilepsy. But epilepsy doesn’t define Maverick. It doesn’t define any person living with this condition.

His mum, Katie, says Maverick is hilarious - always making his parents and brothers laugh. He loves dinosaurs, and one day he might be a dinosaur, and the next a possum or wombat.

One night, Katie heard strange noises from his room. At first, she thought he was unwell.

“‘Come on, Maverick, wake up!’ His eyes were opening and closing. He was mumbling and chewing. I called my husband. 'Something's happening to Maverick. He's not responding to me…'” - Katie

Maverick had experienced a seizure. After months of tests, scans and appointments, Katie was told he had Benign Rolandic Epilepsy.

As his condition evolved, Maverick was later diagnosed with CSWS, a rare childhood epilepsy involving continuous spike activity during sleep that can lead to seizures and developmental regression. He also experiences absence seizures and tonic-clonic seizures.

For Katie, understanding the diagnosis was just the beginning. Trying to understand a rare epilepsy type, and its physical, emotional and developmental impacts, was overwhelming. Like many parents, she wondered what the future would hold.

What she hadn’t anticipated was the grief that came with the diagnosis:

“You still have your child. You have this life you planned for them. You wonder what they're going to be like, what they're going to do when they're older. And it's just taken from you in one moment. Their whole life is so different now…” – Katie

This is why we’re here. A constant in people’s lives. A safe place to turn when families are overwhelmed. We provide support, information, education and training, peer support, and tools such as Epilepsy Management and Emergency Medication Plans.

But we need you.

1 in 200 children will be diagnosed with epilepsy.

Behind every number is a child and their family. Behind each of them is you.

Please donate and help families like Katie’s and Maverick’s access the support and care they need to live well with epilepsy 💜

Visit www.epilepsyfoundation.org.au/in-one-moment to donate.

04/06/2026

When Stella had her first seizure in 2022, everything changed for her family.

Since then, life with epilepsy has meant uncertainty, hospital visits, and the daily reality of managing multiple seizure types - and the emotional toll that comes with it.

For her mother, Stacey, and her brother, Marlon, that journey became something more: music 🎶

Together, as Stacey & Son, they created "Brave" - a song inspired by Stella’s strength and the quiet courage shown by families living with epilepsy every day.

"My son and I wish people understood that epilepsy is more than just having seizures. Epilepsy is not just physically exhausting; it's also emotionally draining."

Brave, recorded and produced by Daniel Giaccio, captures those unseen moments - the fear, the fatigue, and the resilience that carries families through.

At its heart is a simple truth: bravery isn’t always loud. Sometimes it’s just getting through another day.

The song is dedicated to everyone living with epilepsy 💜

Read their story and discover the inspiration behind Brave at https://epilepsyfoundation.org.au/stacey-and-son-brave/

The full song is expected to be released in November 2026. Follow Stacey & Son on Instagram for updates.

28/05/2026

This is Braxton 💜 He’s 10 years old and loves dinosaurs and cars. To his family and friends, he is one of the most loving, caring, empathetic people you’re ever likely to meet.

When Braxton was just 18 months old, life for him and his family changed forever.

It was Naomi’s (Braxton’s mum) first day back at work after maternity leave when she received a phone call:

“Get to the hospital right now – something’s not right with Braxton.”

At the hospital, Naomi was given terrifying news: Braxton had experienced a 38-minute-long seizure.

What followed was a long journey of tests, scans, appointments, and searching for answers. Braxton was diagnosed with epilepsy – specifically Benign Rolandic Epilepsy, as well as Focal Epilepsy and Tonic-Clonic Epilepsy, both of which can impact a child’s development.

“When he has a focal seizure, it's almost like he's having a stroke - everything droops, and he drawls… The seizure then progresses to becoming tonic-clonic. His whole body trembles and shakes…” - Naomi

As Naomi processed the diagnosis, questions followed: Would people judge him? Would he struggle with relationships or work? Could he drive one day? Where do we turn for help?

These are the questions many families face after diagnosis. This is why we’re here.

The Epilepsy Foundation is a safe space to talk openly about epilepsy. We provide support, information, education and training, peer support, and tools such as Epilepsy Management and Emergency Medication Plans. But we need you.

1 in 200 children will be diagnosed with epilepsy.

Behind every number is a child and a family whose life has changed in an instant.

Please donate today. Your support helps families like Naomi’s and Braxton’s access the care and information they need as they learn to live with epilepsy 💜

“I don't know how I would have gotten through this without the Epilepsy Foundation by my side. They’ve been supporting and guiding us, providing information, answering any questions we've had. I can deal with this as I have the Foundation. We’re going to be alright!” - Naomi

Visit www.epilepsyfoundation.org.au/in-one-moment to donate.

27/05/2026

A couple of weeks ago, the Epilepsy Foundation officially lodged our submission to the Commonwealth Government’s Senate Inquiry into Epilepsy in Australia 📝🧠

Systemic advocacy is a critical part of the work we do at the Epilepsy Foundation, and this Inquiry represents an important opportunity to push for meaningful national reform for the 270,000 Australians currently living with epilepsy and the 1 in 25 Australians who will be diagnosed with epilepsy in their lifetime.

Our submission highlights the urgent need for a nationally coordinated response to epilepsy. Across Australia, too many people face delays in diagnosis, fragmented systems, unequal access to care and support, high out-of-pocket costs, and barriers to education, employment, mental health support and community participation.

We are calling for:
▪️ A National Action Plan for Epilepsy
▪️ National Optimal Care Pathways
▪️ Better integration across health, disability and community systems
▪️ Improved equity for underserved communities
▪️ Stronger lived experience leadership in policy and decision-making

A huge thank you to everyone who contributed to this submission by completing our online survey and sharing your lived experience 💜 We received 57 responses from people across the epilepsy community, and your voices helped shape this important advocacy work.

The next stage of the Inquiry will involve public hearings in June, before final recommendations are handed down on 10 September.

We’ll continue advocating for a future where every Australian living with epilepsy can access the support, care and opportunities they deserve 📣💜

21/05/2026

Help shape the future of seizure alert technology 🧠

Quadlytics is developing a wearable device designed to warn of epileptic seizures minutes before they occur - and they’re looking for people to help shape what comes next.

They want to understand real-world experiences with everyday wearable technology, such as:
▪️ Smart watches
▪️ Devices that monitor heart rate or sleep

What’s involved:
▪️ A casual virtual chat (15–30 minutes) held at a time that suits you
▪️ No preparation needed - just your lived experience with wearable tech
▪️ Focus on building technology that is comfortable, reliable, and trusted.

If you’d like to take part, please register your interest by emailing Colin McCauley at [email protected]

19/05/2026

This is Braxton and Maverick 💜 Two amazing young men whose lives are very different. Yet in one moment, both of their worlds changed.

That moment was a diagnosis of epilepsy.

Braxton and Maverick are the faces of our May-June appeal. Please say hello to them! They’d love to hear from you.

Their mums – Naomi is mum to Braxton, and Katie is mum to Maverick – made the brave decision to share their stories of the impact epilepsy is having on their sons. The difference we’ve been able to make in their lives. And their hope of eliminating the stigma and discrimination that still exists around epilepsy.

Because to them – and to all of us at the Epilepsy Foundation – Braxton and Maverick are superheroes 🦸🦸 Through all the seizures, tests, scans, appointments, changes to routine, and medication trials, these boys have not once wavered in their bravery and resilience.

All they want is for their mums and families to get the support and care they need from an organisation that truly understands how unpredictable and challenging epilepsy is.

That’s why we are here. Providing support, information, education and training, peer support, tools such as Epilepsy Management and Emergency Medication Plans, for every person living with epilepsy. But we need you.

With no government funding, we rely on the kindness of the community to keep our vital programs going for all the Braxtons, Mavericks, Naomis and Katies impacted by epilepsy.

Will you make a donation and help us continue to be here for every person living with epilepsy? Visit www.epilepsyfoundation.org.au/in-one-moment to donate.

And please write a message in the comments to Braxton and Maverick ✉️ We’ll pass every message on to them. Thank you for caring 💜

18/05/2026

This National Volunteer Week, we’re celebrating the incredible people who give their time, energy and compassion to support the epilepsy community 💜

From our op shops and events, to our head office and community programs, our volunteers help make a real difference every single day. Whether it’s helping raise vital funds, supporting campaigns, assisting behind the scenes, or creating welcoming spaces in our stores, every contribution matters.

To all our volunteers - thank you. Your generosity helps people living with epilepsy feel supported, connected and understood 👏

And if you’ve ever thought about volunteering, maybe this is Your Year to Volunteer.

Join our amazing volunteer community:
💼 Head office volunteering: https://bit.ly/4tD0eOr
🛍️ Op shop volunteering: https://bit.ly/4uj0yTM
🙋 Meet our volunteers: Follow our Epilepsy Foundation Op Shops page to learn more about some of our volunteers throughout the week.

12/05/2026

Today, on International Nurses Day, we celebrate and thank the incredible epilepsy nurses and educators at the Epilepsy Foundation - Matt, Kelly, Gretel and Pip 💜

Every day, they provide expert guidance, education, reassurance and support to people living with epilepsy, their families, schools, workplaces and communities. Their compassion, dedication and knowledge make a real difference in the lives of so many Australians impacted by epilepsy.

Thank you for the care you give, the confidence you build, and the impact you make every single day 👏

We also extend our heartfelt thanks to all nurses across Australia and around the world for the vital care, compassion, and support you provide to your communities every day.

Looking to build your understanding of epilepsy and seizure first aid? Learn directly from our experienced epilepsy nurses and educators through our epilepsy education and training courses.

🔗 Learn more and register: https://bit.ly/4la94Pg
📞 (03) 8809 0695 | 📧 [email protected]

Happy International Nurses Day 💜

11/05/2026

📅 Submissions to the Senate Inquiry into Epilepsy will close this Friday, 15 May.

This is a rare opportunity to influence how epilepsy is understood, supported, and prioritised in Australia 🧠

Every submission helps build a clearer picture of:
▪️ What people are experiencing
▪️ Where the system is falling short
▪️ What needs to change

👉 If you’ve been thinking about sharing your story, now is the time. We encourage you to make a submission: https://bit.ly/47gm2aq

✏️ Note: Completing the survey does not replace a personal submission. Personal submissions must be made separately via the Parliament of Australia website.

Real change starts with people being heard – and your voice matters 💜

08/05/2026

Developmental and Epileptic Encephalopathies (DEEs) are a group of rare, complex epilepsies that usually begin in infancy or early childhood 🧠 But DEEs are more than just seizures.

For people living with DEE, seizures can be frequent, varied, and often difficult to control. However, the condition also affects brain development — meaning children may experience developmental delay, learning differences, changes in behaviour, movement challenges, and difficulties with speech, sleep, feeding, and more.

In many cases, DEE is caused by changes in a person’s genetic code, although other causes include differences in brain structure, injury, or metabolic conditions. Because every DEE is different, so is every journey.

Early diagnosis, specialist care, and tailored treatment can make a meaningful difference. While seizure control can be challenging, supports such as medication, dietary therapy, allied health, and in some cases surgery, may all play a role in care.

Behind every diagnosis is a person — and a family navigating something incredibly complex 💜

For further information about epilepsy, please visit www.epilepsyfoundation.org.au or contact the National Epilepsy Support Service on 1300 761 487 or [email protected]
Face-to-face meetings are by appointment only.

Address

Level 1, Suite 3/210 Canterbury Road
Melbourne, VIC
3126

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm

Website

https://epilepsyfoundation.org.au/contact-us/

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