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Brainwaves e-News, 76 2026

Shop — Wed, 15 Apr 2026 23:11:17 +0000

Dear Friends

A Defining Moment: Senate Inquiry into Epilepsy

As mentioned in our last Brainwaves Newsletter we are at a pivotal moment for our sector.

The Australian Government has announced a national Senate Inquiry into epilepsy — a significant and rare opportunity to strengthen understanding, policy, and systems of support for people living with epilepsy.

This is an opportunity to turn lived experience and professional insight into meaningful, system-level change.

Why this matters

Epilepsy affects over 250,000 Australians, yet many people continue to experience:

Delays in diagnosis and access to care
Inconsistent support across systems
Limited awareness and understanding
Barriers to treatment and innovation
Ongoing safety risks, including SUDEP

Submissions close 15 May 2026 — so if you are considering contributing, now is the time.

Epilepsy affects over 250,000 Australians, yet many people continue to experience:

Delays in diagnosis and access to appropriate care
Variability in support across regions and systems
Limited awareness and understanding in the community
Barriers to accessing emerging treatments and technologies
Ongoing safety risks, including SUDEP (Sudden Unexpected Death in Epilepsy)

This Inquiry provides a structured pathway to bring these issues forward and contribute to meaningful, system-level improvement.

Where to start

We’ve created a central page with everything you need:

Start here:
https://epilepsytasmania.org.au/senateinquiry/

From this page you can:

Understand the Inquiry
Watch the webinar series
Download submission templates
Access guidance on how to contribute

We can help

We are supporting individuals, clinicians and organisations who are considering contributing to the Inquiry.

If you would like to:

Sense-check your approach
Align your submission to the Terms of Reference
Talk through ideas or recommendations

then email senateinquiry@epilepsytasmania.org.au and we can assist you.

A defining moment

This Senate Inquiry represents a defining moment — not only for individuals and families living with epilepsy, but for clinicians, organisations, and the broader system that supports them.

It is rare to have an opportunity where lived experience, clinical insight, and system knowledge can come together in a way that directly informs national policy.

If you are a clinician, this is an opportunity to ensure your experience of the system — what works, what doesn’t, and what needs to change — is clearly heard.

If you are part of an organisation, this is a moment to contribute to shaping more consistent, effective, and equitable models of care.

And if you know someone living with epilepsy — a patient, a client, a colleague, or a family member — please consider sharing this opportunity with them.

We are hopeful that through collective contribution, this Inquiry can lead to practical, meaningful improvements in safety, care, and quality of life for people living with epilepsy across Australia.

Thank you for taking the time to engage with this work.

Warm Regards,
Paul Quilliam CEO

P.S. If you haven’t had a chance to explore the Inquiry yet, here are three quick ways to get started:

Start here (everything in one place):
https://epilepsytasmania.org.au/senateinquiry/

Watch the webinar series (understand how to contribute):
https://www.youtube.com/playlist?list=PLCaFMR0KqP676fgnyrxqsc9jLhk9fkYUX

View the official Senate Inquiry:
https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia

Warmest Regards

Paul Quilliam CEO

Brainwaves e-News, 76 2026

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Brainwaves e-News, 75 2026

Shop — Wed, 18 Mar 2026 21:09:58 +0000

Dear Friends

Momentum, Visibility and a Critical Opportunity for Change

As we move beyond the halfway mark of March, I want to take a moment to reflect on the incredible energy and visibility we’ve seen so far throughout March – Make March Purple (MMP).

Across Tasmania and beyond, we’ve seen and will continue to see landmarks illuminated in purple, communities coming together at local events, and individuals proudly sharing their stories and support. These moments matter. They spark conversations, challenge stigma, and remind people living with epilepsy that they are not alone.

To everyone who has hosted, attended, donated, or simply worn purple—thank you. Your efforts are helping us build a stronger, more visible epilepsy community.

There’s still time to get involved. If you haven’t already, we encourage you to support our work by contributing to our fundraising efforts. Every donation helps us continue providing vital services, education, and advocacy for Tasmanians living with and affected by epilepsy.

If you are also doing a fundraising event next week, or doing a Muck Challenge on World Purple Day 26^th March, consider creating a fundraising page that you can share with your network. Check out https://www.makemarchpurple.org.au/event/tas to register.

A Defining Moment: Senate Inquiry into Epilepsy

Alongside the momentum of MMP, we are also at a pivotal moment for our sector.

The Senate Inquiry into epilepsy represents a significant and rare opportunity to elevate the voices of people living with epilepsy, their families, carers, and the organisations that support them. This inquiry has the potential to shape national understanding, policy, and investment in epilepsy care and support for years to come.

It is critical that we, as a sector, show up strongly.

We are particularly hopeful to see a high volume of submissions from organisations, as well as individuals with lived experience. Every submission adds weight to the case for meaningful change—whether that’s improved access to services, better awareness, or stronger systemic support.

If you’re considering making a submission, now is the time. While the deadline is May 15^th, it’s a chance to answer your questions and give you plenty of time to tell your story and for your voice to be heard.

The following link with take you to the Terms of Reference for the Senate Inquiry https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/EpilepsyinAustralia

To support our community, in coming weeks we will be hosting online information sessions to guide you through the submission process, including what to include, how to structure your response, and how to ensure your voice is heard:

This is a moment where awareness and advocacy come together. Through MMP, we are making epilepsy visible. Through the Senate Inquiry, we have the chance to turn that visibility into lasting change.

Thank you for being part of both.

Special Invitation

A special invitation to our North-West Coast community—join us in Devonport as we celebrate 50 years of service and support. This Civic Reception at the paranaple Convention Centre on Friday 27 March (4.00–5.00pm) will bring together people living with epilepsy, families, clinicians, and community members to reflect on our shared journey. With a civic welcome from the Mayor of Devonport, this is a wonderful opportunity to connect and celebrate this milestone. We would be delighted to see you there—RSVP via admin@epilepsytasmania.org.au, 6344 6881, or register below:-

https://www.eventbrite.com/e/epilepsy-tasmanias-50th-anniversary-north-west-coast-civic-reception-tickets-1983915976090?aff=oddtdtcreator

Warmest Regards

Paul Quilliam CEO

For stories and videos click below

Brainwaves e-News, 75 2026

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Brainwaves e-News, 74 2026

Shop — Wed, 18 Feb 2026 01:46:09 +0000

Hi Friends,

A Message from the CEO

It’s hard to believe how quickly the year is already gathering pace. The school holidays have come and gone, classrooms are full again, workplaces are settling back into rhythm, and across Tasmania the year is well and truly underway. I hope 2026 has begun kindly for you and your family.

At Epilepsy Tasmania, this time of year always carries a sense of renewed focus. Plans move into action, conversations begin to build, and before long our attention turns toward March — a month that holds special significance for our community.

Make March Purple is always one of the most important months on our calendar — a time when our community comes together to raise awareness, spark conversations, and remind the 5,500 Tasmanians living with epilepsy that they are not alone. In 2026, we’re inviting everyone to “Muck Up for Epilepsy” — to step outside their comfort zone, get a little messy, and stand in solidarity with those whose lives are too often disrupted, interrupted, or, as our theme says, “mucked up” by epilepsy.

It’s bold. It’s a little bit fun. And most importantly, it starts conversations.

But beyond the campaigns and events, what matters most is people.

It’s the teacher who books epilepsy training so they feel confident supporting a student.
It’s the family celebrating 1 day, 10 days, or 100 days seizure free.
It’s the person quietly navigating financial stress who reaches out for support.
It’s the pharmacy team opening their doors to help us raise awareness.
It’s you — reading this, sharing this, showing up.

Every action, no matter how small it may seem, strengthens our community.

As we move toward March, I encourage you to think about how you might get involved — whether that’s taking on the Purple Muck Challenge, hosting a fundraiser, booking training for your workplace, or simply starting a conversation about epilepsy.

Thank you for being part of our journey. Thank you for caring. And thank you for helping us ensure that in 2026, no Tasmanian faces epilepsy alone.

Warmest wishes

Paul Quilliam
CEO, Epilepsy Tasmania

Brainwaves e-News Ed 74 2026

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Brainwaves e-News, 73 2025

Shop — Thu, 18 Dec 2025 01:36:20 +0000

Hi Friends,

A Message from the CEO

As 2025 comes to a close, I want to take a moment to thank you for your support in what has been another remarkable year for Epilepsy Tasmania.

While our 50th anniversary celebrations have reminded us of the legacy we’ve built, this year has been all about momentum—growing our services, deepening community partnerships, and staying focused on making a real difference for Tasmanians living with or impacted by epilepsy.

One of the most heartening signs of that momentum was this year’s Walk for Epilepsy. Thanks to the incredible efforts of individuals, families, schools, and workplaces across Tasmania, we raised more than $16,600.00 to support vital services, peer programmes, and training initiatives. Thank you to every single person who walked, donated, or cheered from the sidelines. Your impact is felt far and wide.

As we prepare for 2026, we are also looking to grow our volunteer base. In the new year, we’ll begin reaching out to those who’ve already expressed interest in volunteering—we’re looking forward to meeting with you and hearing how you’d like to be involved. We’re especially keen to hear from:

People with lived experience of epilepsy who may wish to be trained and supported to take part in peer support activities
Individuals or small groups interested in helping us with fundraising and awareness initiatives in their communities

If this sounds like something you’d like to be part of, we’d love to hear from you. Volunteering is a powerful way to create change—and we’re ready to walk alongside you.

In the last few years, we have seen hundreds of workplaces and schools across Tasmania download and display our Seizure First Aid Posters, which has been a brilliant step forward in building epilepsy-aware environments. These resources not only improve safety—they open the door to conversations, inclusion, and compassion. We encourage every school, business, and organisation to continue raising awareness into the new year.

Looking ahead to March 2026, our annual Make March Purple campaign is just around the corner and we’re already encouraging councils, schools, and businesses to start planning. Lighting up buildings in purple, hosting purple-themed days, and running fundraisers are just a few of the ways you can help show your support and raise awareness. Early planning means bigger impact—so now’s the perfect time to start having those conversations in your workplace or school.

We are also proud once again to be part of the ABC Giving Tree Appeal, working alongside other community organisations to spread support and hope this Christmas to Tasmanians who need it most.

Finally, to our wonderful Epilepsy Tasmania staff and Board—thank you. Your commitment, creativity, and care underpin everything we do. This year has shown once again how passionate and capable our team is, and how ready we are for the challenges and opportunities ahead.

Thank you to everyone in our community who stood with us in 2025. Your support helps make Tasmania a place where people with epilepsy are safer, better understood, and never alone.

Wishing you and your loved ones a safe, peaceful, and joy-filled festive season.

Warmest wishes

Paul Quilliam
CEO, Epilepsy Tasmania

Brainwaves e-News Ed, 73 2025

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Brainwaves e-News Ed, 72 2025

Shop — Thu, 11 Sep 2025 04:53:34 +0000

Walking Together — Walk for Epilepsy 2025

As the days grow warmer and spring edges closer, we’re excited to welcome the return of Walk for Epilepsy 2025. From 1–25 October, Tasmanians will come together with people across Australia to take part in something that truly changes lives.

This event isn’t just about distance or fundraising totals — it’s about community, courage, and connection. Every participant helps raise awareness of epilepsy, and every dollar raised supports families right here in Tasmania.

For our returning walkers

Many of you joined us last year, and we’re thrilled to see your names appearing again in 2025. Your commitment shows how powerful it is when people keep showing up to champion the epilepsy community.

For those who joined us before but haven’t yet registered

We remember the energy and generosity you brought last year. If you’ve been thinking about coming back, we’d love to welcome you again — your involvement makes this event feel like family.

For our first timers

A special welcome to those joining for the very first time. Whether you’re participating for yourself, in honour of a loved one, or simply in support of the cause, your decision to get involved is a generous and powerful act. You’re now part of a growing community helping Tasmania better understand and support people living with epilepsy.

For everyone in our community

Walking for epilepsy sends a strong message: that epilepsy matters, that Tasmanians living with it matter, and that no one should ever feel alone on their journey. By taking part, you’re not only raising funds — you’re sparking awareness, building understanding, and inspiring hope.

Will you join us this October?
Together, we can create a brighter, more supportive Tasmania for everyone affected by epilepsy.

Warmly

Paul Quilliam

CEO

Brainwaves e-News Ed 72 2025

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Brainwaves e-News Ed 71, 2025

Shop — Wed, 30 Jul 2025 01:17:07 +0000

A Message from the CEO – 50 Years of Impact, and the Road Ahead

Over the past few months, as we prepare to celebrate Epilepsy Tasmania’s 50th anniversary, I’ve had the enormous privilege of reconnecting with people who have helped shape this organisation—past clients, clinicians, volunteers, staff, carers, board members and corporate supporters whose commitment laid the foundation for everything we do today.

These conversations have been humbling. They weren’t centred around roles or titles, but rather around people—about who they supported, who they walked alongside, and how their efforts helped change lives.

It’s been a joy to sit down over coffee and cake with our very first President, Mr Mike Jenner, and to share stories with Mr Ric Paterson, who was the MC at our very first fundraiser back in 1975—where, remarkably, the first prize in the raffle was a Toyota sewing machine!

But what struck me most was….

Brainwaves e-News Ed 71 2025

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Brainwaves e-News Ed 70 2025

Shop — Tue, 20 May 2025 22:33:12 +0000

Hi Friends,

A Message from the CEO – Looking Back and Giving Forward

This year marks a profound milestone for Epilepsy Tasmania—50 years of service, support, and advocacy for Tasmanians living with and impacted by epilepsy. Since our first meeting in July 1975, community generosity has been the steady heartbeat behind everything we’ve achieved. From launching awareness campaigns to delivering personalised support services across our state, your support has enabled us to walk alongside thousands of individuals and families navigating their epilepsy journey.
As we prepare to officially celebrate our 50th anniversary in July………

Brainwaves e-News Ed 69 2025

Shop — Tue, 15 Apr 2025 00:05:23 +0000

Hi Friends,

March Reflections from the CEO

March has been a truly incredible month for Epilepsy Tasmania. Through the energy, generosity, and commitment of our community, we’ve raised thousands of dollars more to support service delivery and vital support programs for Tasmanians living with and impacted by epilepsy. Thank you!

There were so many highlights. We officially moved into our new Launceston office at 31 Thistle Street, within the Door of Hope precinct. This new space gives us better parking, improved training facilities, and a vibrant new environment to continue supporting the epilepsy community across Tasmania.

Across the state, buildings and landmarks were lit up purple to raise awareness and show support, creating a stunning visual reminder of the 270,000 Australians living with epilepsy.

World Purple Day was another major highlight. In true Purple Hero spirit, we hosted two epic Muck Challenges—first in Hobart and then the next day in Launceston. I personally got “mucked” two days in a row, alongside our amazing team member Amy! (Keep an eye out for the photo proof.) It was messy, it was purple, and it was all for a fantastic cause.

A huge thank you also goes to Youngtown Pharmacy and Ethical Electrical & Fire & Ethical Bookkeeping & Admin, who went above and beyond.

Youngtown Pharmacy raised thousands of dollars, sold our merchandise and also dyed their hair purple to show their support—an amazing example of community spirit in action!

The Ethical Team hosted a purple lunch for their staff with Lance donning a purple beard as well as being head chef! Thanks Lance also for being on the BBQ team at the Launceston Muck Challenge. Another amazing example of community spirit in action.

As we reflect on this huge month, it’s important to remember that 2025 marks a very special milestone-our 50th Anniversary. For half a century, community fundraising has played a critical role in allowing Epilepsy Tasmania to support, educate, and advocate for people living with epilepsy.

As we celebrate 50 years of service and support, we look ahead to the next 50 years with the same commitment and passion. With your continued help, we can ensure every Tasmanian impacted by epilepsy has access to the care and understanding they deserve—today, tomorrow, and for decades to come. Thank you for standing with us.

Paul Quilliam
CEO, Epilepsy Tasmania

Brainwaves e-News Ed 68 2025

Shop — Thu, 27 Feb 2025 00:27:10 +0000

As we approach March, excitement is building for Make March Purple—our annual campaign to raise awareness and funds for epilepsy. This year’s theme, Purple Heroes, is all about celebrating the strength of those living with epilepsy, their caregivers, and the incredible community that supports them.

I’m thrilled to see so many individuals already stepping up as Purple Heroes—taking on challenges, raising funds, and making a real impact. Every effort, big or small, contributes to our vital work, and I encourage you to join in. Whether it’s hosting a Purple Grill BBQ, embracing the Purple Muck Challenge, or encouraging your school or workplace to participate, there’s a way for everyone to get involved.

Each year, one of the highlights of Make March Purple is our Purple Plush Toy Competition! This year, we’re introducing two adorable new additions—a cat and a kangaroo with her joey—and we need your help to name them. (see below)

Our Purple Illuminations campaign is also gaining momentum, with landmarks across Tasmania set to light up in support of epilepsy awareness. From Launceston Town Hall to Wrest Point Casino, these illuminations send a powerful message that epilepsy deserves visibility and understanding. We’re really keen also for people to be creative and light up classrooms, homes, cafes, gardens, dog kennels etc and email us through some pics for us to add to our socials.

Finally, I’m delighted to share that Epilepsy Tasmania’s Launceston office is on the move! In March, we’ll be relocating from 2 Willis Street to 31 Thistle Street, within the Door of Hope precinct. This exciting new space offers better parking, improved training facilities, and great coffee—plus, we’ll be surrounded by other fantastic tenancies, including childcare, a gym, and allied health services. We can’t wait to welcome you there!

March is our time to shine purple—let’s make it our biggest and boldest campaign yet!

Paul Quilliam
CEO, Epilepsy Tasmania

Brainwaves Ed 68 2025

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Brainwaves e-News Ed 67 2025

Shop — Tue, 31 Dec 2024 22:53:39 +0000

This year, we are proud to celebrate the 50th anniversary of Epilepsy Tasmania. For five decades, we have been working to support Tasmanians living with epilepsy and their families, building a stronger and more understanding community. This milestone offers us a chance to reflect on our journey, celebrate our achievements, and focus on the work that still lies ahead.

It all began on the 28th of July, 1975, when a group of dedicated individuals came together with a shared vision: to create a supportive community for those living with epilepsy. Their passion and determination set the foundation for what has grown into a vital organisation in Tasmania. These early advocates broke down barriers, challenged stigma, and made it clear that no one living with epilepsy should face it alone.

Since then, Epilepsy Tasmania has grown and adapted, staying true to the principles of care, education, and advocacy. From establishing support networks and delivering training to promoting research and raising awareness, our achievements have been made possible by the efforts of our staff, volunteers, donors, and supporters.

As we mark this significant anniversary, we remain focused on the future. There is still much to do. We are committed to improving access to healthcare, raising awareness about epilepsy, and embracing new opportunities to enhance the lives of those we serve.

Looking ahead, we envision a Tasmania where every school, workplace, and community supports those living with epilepsy; where new treatments and research offer greater hope; and where stigma becomes a thing of the past.

We invite you to join us in this celebration and in shaping the next chapter of Epilepsy Tasmania’s story. Whether through sharing your experiences, volunteering, or supporting our initiatives, your contribution makes a difference.

Here’s to 50 years of impact and to the work we’ll do together in the years to come.

Paul Quilliam
CEO, Epilepsy Tasmania

Brainwaves e-News Ed 67 2025

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