The Hemispherectomy Foundation of Australia seeks funding to launch a transformative community awareness campaign that will reshape perceptions of children and young people living with half a brain. Our mission is to illuminate the remarkable resilience and potential of these young survivors, moving beyond outdated narratives of limitation to a celebration of their unique strengths ...
Hemispherectomy Foundation Australia
Hemispherectomy community awareness
GOAL
$10,000
Australia > National / Multi-state > Metro and Regional
Field of Interest
- Health/wellbeing and medical research
- Individual/family services and support
Target Population
- People with a disability, illness or disease
- Young people (6-25)
Hemispherectomy Foundation Australia
The Hemispherectomy Foundation Australia (HFA) is an ACNC registered charity dedicated to supporting families impacted by hemispherectomy surgery. Hemispherectomy is a radical surgical procedure that removes or disconnects one half of the brain, used to treat children with severe seizures coming from one side (or hemisphere) of the brain. Unfortunately, despite advances in the treatment of epilepsy, some catastrophic childhood seizure disorders can be cured only by this surgery. While the surgery is usually successful at eliminating or reducing the seizures, it does come with significant compromise, as children live with lifelong disabilities after hemispherectomy.
Our Foundations’ goals are to:
• provide information, advice and support to families with children who have had hemispherectomy surgery or who may need a hemispherectomy in the future.
• raise awareness of hemispherectomy surgery, and the ongoing needs of hemispherectomy children and their families.
•promote research aimed at improving the recovery and quality of life of hemispherectomy children and young people.
HFA enriches the lives of children and young people impacted by hemispherectomy and provides support and connections to their families. We offer resources, understanding and trauma-informed guidance that other organisations can’t provide. Through peer networks, family outreach and community events, HFA reduces the isolation that often comes with the hemispherectomy journey, creating a safe place to share experiences and find hope.
HFA funds programs, advocacy and support that help children adapt, thrive and live fulfilling lives despite the challenges of live with one brain hemisphere.
Project Summary
The Hemispherectomy Foundation of Australia seeks funding to launch a transformative community awareness campaign that will reshape perceptions of children and young people living with half a brain. Our mission is to illuminate the remarkable resilience and potential of these young survivors, moving beyond outdated narratives of limitation to a celebration of their unique strengths and abilities.
Hemispherectomy, a rare and radical brain surgery, saves lives but often leaves children and families grappling with societal misconceptions. Our proposed campaign aims to dismantle these barriers by partnering with a creative agency to craft a powerful, positive narrative that resonates with the wider community.
This initiative will:
1. Showcase inspiring stories of children thriving post-surgery, highlighting their achievements and adaptability.
2. Educate the public about the brain’s incredible plasticity and capacity for reorganisation.
3. Provide a platform for families to share their journeys, fostering understanding and support.
By shifting the focus from what these children have lost to what they have gained—resilience, determination, and unique perspectives—we aim to foster a more inclusive society that recognises and nurtures their potential.
Support for this project will enable us to engage a creative agency to develop a story-based community campaign, including social media and web content.
We would like to rewrite the story of hemispherectomy, transforming public perception and opening doors of opportunity for our extraordinary children and young people to reach their full potential in an Australia that sees their strength, not their limitations.
Project Outcomes
The expected outcomes of this project would be multifaceted, with the most important outcomes being:
1. Greater understanding of hemispherectomy and reduced stigma and misconceptions about children living with half a brain
2. More inclusive attitudes in schools, workplaces, and communities, leading to increased participation of hemispherectomy children and young people and improved self-esteem and confidence for hemispherectomy children and young people
3. Increased visibility: The opportunity to reach families who are searching for information on hemispherectomy and the neurological conditions which frequently require hemispherectomy surgery, reducing their sense of isolation.
4. Grow our community reach: Expand the network of families and professionals connected to HFA, increasing our mailing list sign-ups and event participation.
5. Boost HFA fundraising and sustainability by attracting potential sponsors, ensuring our resources and conferences remain accessible for families.
6. Strengthen our advocacy impact: Establish HFA as the go-to organisation in Australia for information and support on hemispherectomy.
7. Research Stimulation through increased interest in research related to hemispherectomy and brain plasticity, with potential for new collaborations between neuroscience researchers and the HFA, intended to improve the quality of life of hemispherectomy children, young people and their families.
Budget Breakdown
TOTAL BUDGET: $15,000
FUNDING
| Funding source | Amount |
|---|---|
| Internal funding | $5,000 |
| Funding gap | $10,000 |
EXPENSES
| Expense item | Amount |
|---|---|
| Engagement of a creative agency to tell the story of hemispherectomy and change the narrative | $15,000 |
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