Hemispherectomy Foundation Australia

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

08/06/2026

💜 When a child has a hemispherectomy, it affects the whole family, including brothers and sisters.

Siblings often see seizures, hospital visits and the challenges their brother or sister faces. This can be hard to understand and cope with. Sometimes siblings may feel worried, left out or like they don't get as much attention.

Siblings need support too.

This helpful guide from the Pediatric Epilepsy Surgery Alliance shares simple ways families can support the siblings of our hemi heroes and help them feel seen, heard and included.

💜Link in comments 👇

01/06/2026

Our next Annual General Meeting is approaching.

Be inspired by all the achievements of the HFA in recent months and hear what’s on the horizon for our future projects 💜

28/05/2026

We’re excited to share that our early childhood and primary school resources are now live on the HFA website!

A huge thank you to all the parents and young people who generously shared their time and experiences through our focus groups. Your voices have shaped these resources to ensure they reflect real-life challenges and offer meaningful, practical strategies for educators.

We encourage families of preschool and primary school-aged children to share these resources with their schools so that we can help educators better understand and support every child to thrive.

Link below 👇
https://hemispherectomyaustralia.org.au/educator-guides/

25/05/2026

Freya's Story

After an uneventful, normal developing childhood, Freya began experiencing seizures on a family holiday at age six.

This marked the start of a long journey through diagnosis, treatment, and ultimately life-changing surgery that gave Freya the chance to thrive.

https://hemispherectomyaustralia.org.au/freyas-story/

24/05/2026

Building global connections for Australian families.

Through this international partnership, HFA connects Australian families with global expertise, resources, and advocacy, expanding the support available to every hemispherectomy family.

Pediatric Epilepsy Surgery Alliance

17/05/2026

😍😍

13/05/2026

The Commonwealth Government is currently conducting a Parliamentary Inquiry into Epilepsy. The Inquiry is examining a range of important issues, including barriers to epilepsy treatment and support, the psychosocial impacts of epilepsy, and community awareness of epilepsy and its treatments.

Because Hemispherectomy Foundation Australia families know more about epilepsy than they would ever wish to, we have provided a submission to the Inquiry highlighting the experiences and challenges faced by families affected by the most severe forms of epilepsy resulting in hemispherectomy surgery.

Our submission has now been accepted and published on the Inquiry website at Submission No. 71

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

09/05/2026

Happy Mother’s Day to all the incredible mums, mother figures and caregivers in our Hemi community 💗

07/05/2026

Pediatric Epilepsy Surgery Alliance have created a practical guide on mental health support for families of children anywhere on the epilepsy surgery journey.

It covers how epilepsy and surgery can affect emotions, what parents should watch for in themselves and their children, and where to turn for help.

Link in comments 👇