Hemispherectomy Foundation Australia

03/10/2026

From our friends Pediatric Epilepsy Surgery Alliance
Sharing our stories connect us all - near and far.

Share your story Together we can create a community of courage Every family’s epilepsy surgery journey is unique, and your voice can bring hope, encouragement, and guidance to others walking the same path. By sharing your experience, you help raise awareness, support

22/09/2026

Congratulations to all, including some friendly faces from the HFA crew!

18/09/2026

New research using data from Pediatric Epilepsy Surgery Alliance Global Pediatric Epilepsy Surgery Registry looked at what really happens after hemispheric surgery for Rasmussen's encephalitis.

Link in first comment.

New research using data from our Global Pediatric Epilepsy Surgery Registry looked at what really happens after hemispheric surgery for Rasmussen's encephalitis, based on real stories from 37 caregivers who've been through it.

Link in first comment.

09/09/2026

Thank you Epilepsy Action Australia 💜

Community Partner Spotlight: Hemispherectomy Foundation Australia (HFA) 💜

At Epilepsy Action Australia, we believe in working together for greater impact.

Today, we are shining a light on Hemispherectomy Foundation Australia!

We’re proud to work alongside HFA to strengthen connections and support families navigating the unique challenges of epilepsy and hemispherectomy surgery. 💜

Learn more about their work here: https://hemispherectomyaustralia.org.au/

04/09/2026

A great resource for the Hemi Community!

Thank you Pediatric Epilepsy Surgery Alliance

Everyday life is full of tasks designed for two hands. But the right gadget can make a huge difference! We put together 120+ tools and products for one-handed living, especially helpful for children and adults in our community with hemiparesis after hemispherectomy or other surgeries that affect the motor strip.

Find the list here: https://ow.ly/MrNb50ZHZNn

31/08/2026

👂 We talk a lot about vision after hemispherectomy — but what about hearing?

When part of the temporal lobe is removed or disconnected, the brain’s ability to process sounds and words can be affected too.

So, what can help at school?

In this clip, audiologist Amanda Levy shares a simple but powerful example: sitting close to the teacher and being able to see her face while she speaks.

Small changes to the listening environment can make a BIG difference. 💜

🎥 Watch the clip to learn more.

Thank you Pediatric Epilepsy Surgery Alliance

31/08/2026

Some medical journeys are impossible to put into words. They can come out of nowhere, turn life upside down, and leave families facing decisions they never imagined making.

For our HFA families, hemispherectomy is one of those journeys.

Drug-resistant epilepsy may be the catalyst for surgery, but every family’s path to that point is different. What unites us is the experience of making the impossible decision to disconnect or remove one of our child’s brain hemispheres — and then learning to navigate life on the other side.

We’re so proud to help share these stories and shine a light on the incredible people behind them.

Hope in One Hemisphere! 💜

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.