Hemispherectomy Foundation Australia

12/08/2026

Some complex medical journeys are hard to put into words. They can come out of nowhere, turn your life inside out, and have you questioning all of your hopes and dreams.

Hemispherectomy is one of those journeys.

We know drug-resistant epilepsy is the catalyst for this life-changing brain surgery, but that alone doesn't speak to the full, shared experience. It is merely the condition that requires intervention. The pathways leading to that point are often unique and experienced in entirely different ways.

As a parent-led and operated charity, Hemispherectomy Foundation Australia (HFA) exists because of those collective experiences.

They shape our mission, guide our vision, and inspire the way we turn lived experience into action to support and empower our community, today and into the future.

We are united in connection, community and celebration of our children, our 'Hemi Heroes', whose lives took an unexpected turn through diverse and complex medical events; that ultimately brought each parent to face the same impossible decision: to disconnect or remove one of their child's brain hemispheres.

For a community like ours, it's easy to exist in isolation. It's not every day that we have the opportunity to share our collective stories at the same time, until recently.

Over the weekend, a small number of HFA families and their Hemi Heroes came together on camera with creative agency ShareStory to speak to their experiences.

We heard from parents of children aged 2-26 who made that impossible decision. Parents who lived a life before drug-resistant epilepsy, who watched their child endure unimaginable medical challenges, and who sent them into theatre not knowing who they might be, or what life would look like, on the other side of irreversible brain surgery.

It's an experience that only our families can truly understand, and one we're proud to help share alongside the incredible team at ShareStory

We're looking forward to sharing the stories of these incredible mums, dads, siblings and Hemi Heroes, and showing that there is, without a doubt, Hope in One Hemisphere. 💜

11/08/2026

Important information for tonight’s census from Carers Australia

Caring happens every day. Today, it can be counted.

Many people think a carer is someone employed in aged care or disability services.

But if you provide unpaid care, help or assistance to a family member or friend because of disability, a long-term health condition, mental illness, terminal illness, alcohol or other drug issues, or age-related needs, you're a carer.

Caring can include helping with everyday tasks, personal care, transport, medications, appointments or simply providing emotional support.

There are more than 3 million carers across Australia, and every caring role deserves to be recognised.

Today, on Census Day, the Australian Bureau of Statistics is asking about unpaid caring responsibilities to help ensure carers are seen, recognised and counted.

Carers receiving Carer Allowance or Carer Payment should also select “yes, provided unpaid care, help or assistance”.

Learn more at abs.gov.au/census and share this post to help others recognise they may be carers too.

06/08/2026

Our latest resource 👇
Link in comments 💜

This guide is designed to help secondary schools support young people after hemispherectomy with confidence and understanding.

It provides practical insights into learning, wellbeing, independence and inclusion during the adolescent years, along with realistic strategies to support participation, build peer understanding and help students thrive throughout their secondary school journey.

26/07/2026

👏👏

Senate Inquiry into Epilepsy in Australia – NSW and WA Community Update

We have received enquiries from people in New South Wales and Western Australia about opportunities to participate in the Senate Committee Inquiry into Epilepsy in Australia.

Following the initial public hearing in Canberra on 26 June 2026, additional hearings have been scheduled in Queensland, Victoria, Tasmania, South Australia and the Northern Territory. At this stage, however, there do not appear to be any hearings planned in either NSW or WA.

Many community members have asked whether people living with epilepsy, family members, carers and healthcare professionals in NSW and WA will have the same opportunity to provide evidence directly to the Senate Committee. Our CEO wrote to the Committee Secretary earlier this week raising this matter. We are currently awaiting a response.

Scheduled public hearings

• 27 July 2026 – Brisbane, QLD
• 3 August 2026 – Melbourne, VIC
• 4 August 2026 – Launceston, TAS
• 24 August 2026 – Adelaide, SA
• 25 August 2026 – Alice Springs, NT

We recognise that people affected by epilepsy live in every state and territory, and as Australia’s national epilepsy support organisation, we will continue to advocate for equitable opportunities for all members of the community to have their voices heard.

We will keep you updated as soon as we receive further information.

06/07/2026

Have you seen our NEW resources?

Our Early Childhood Educator Guide and Primary School Teacher Guide are available now and are designed to help educators better understand and support children after hemispherectomy.

Don't forget to share these free resources with your educators!

🔗 Link below 👇

Supporting Children After Hemispherectomy Guides for Educators These guides have been developed specifically for early childhood educators and primary school teachers to support their understanding of the safety, accessibility and inclusion considerations for children who have undergone hemispherect...

30/06/2026

Thank you Epilepsy Action Australia for your advocacy and strength for the fight for all Australians with epilepsy for research, better connected communities and the right supports 💜

25/06/2026

Two of our long-serving members of the Hemispherectomy Foundation Australia, Carolyn Pinto, Secretary and Kathy Payne, past President and committee member, are speaking on behalf of the HFA for our families and young people living with a Hemispherectomy, at 11am today 💜

📅 Friday, 26 June
💻 Watch live and find hearing information:
https://www.aph.gov.au/News_and_Events/Watch_Read_Listen -content-panel

22/06/2026

📚 Our new Hemispherectomy Educator Guides are now live!

We've created new resources for preschools and primary schools to help educators better understand and support children who have had a hemispherectomy.

Families can now access these guides and share them with their child's educators and teachers.

You can find the guides here - link below👇

15/06/2026

Congratulations to Epilepsy Action Australia and Nabu Cares AI as they partner to help transform the epilepsy care journey!

We’re proud to announce a strategic partnership between Epilepsy Action Australia and Nabu Cares AI to help transform the epilepsy care journey.

Together with people living with epilepsy, we are co-designing and validating bespoke features within the Nabu platform, built specifically for the epilepsy community. By connecting individuals, families, carers, clinicians, schools and support networks through one shared source of truth, we aim to ensure everyone has access to the right information at the right time.

Epilepsy impacts an estimated 270,000 Australians and many others through families, carers and communities. Through this partnership, we are focused on improving care coordination, supporting critical transition points, and empowering people living with epilepsy to feel more connected, confident and in control of their care journey.

This collaboration represents a shared commitment to innovation, person-centred care and better outcomes for the epilepsy community.

Read the full media release:https://www.epilepsy.org.au/wp-content/uploads/2026/06/20260610_Nabu_EAA_Media_Release.pdf