PURA Foundation Australia
Welcome
The PURA Foundation Australia is a national not-for-profit organisation dedicated to improving the lives of individuals diagnosed with PURA syndrome and their families across Australia and New Zealand.
Established to address the significant gaps in awareness, clinical knowledge, and coordinated support for this rare and complex neuro-developmental condition, the Foundation works in partnership with families, clinicians, researchers, and broader community stakeholders to drive understanding, strengthen support systems, and advance meaningful progress in care and research.
Through education, advocacy, research leadership, and strong community connection, the PURA Foundation Australia is building a more informed, supported, and hopeful future for everyone impacted by PURA syndrome.
Support PURA Foundation Australia in the Brisbane Marathon Festival 2026
First identified in 2014, PURA syndrome remains significantly under-researched, and urgent studies are needed to improve care and quality of life.
PURA Foundation Australia supports world-leading research led by Professor Chris Reid, focused on understanding the underlying causes of PURA syndrome and identifying targeted epilepsy treatments.
As Professor Reid explains, “Our hope is to better understand what is causing the disease. By understanding this, we can design therapies that are more precise in the hope of helping not just the seizures, but the myriad of other symptoms these children have.”
This collaborative project with The Florey and the University of Melbourne will also help inform future clinical trials and provide clearer guidance for families living with PURA syndrome. By supporting Team PURA at the Brisbane Marathon Festival in June 2026, every dollar raised brings us closer to new research and treatments for those affected by PURA syndrome.
Download The 2026 Sponsorship Document or William's Fundraising Card.
PURA x The Florey
Education Day and Melbourne Marathon Festival, October 2025
As part of the Melbourne Marathon Festival 2025, members of Team PURA took part in a special behind-the-scenes visit to The Florey Institute, one of Australia’s leading neuroscience research centres.
The event brought together families, researchers, and the PURA Foundation team for a morning of connection, learning, and collaboration. Participants heard the latest updates on PURA syndrome research directly from the scientists leading this work and took part in a guided laboratory tour to see where vital discoveries are being made.
A highlight of the day was hearing from families who shared their lived experiences of life with PURA syndrome. Their insights offered powerful context for the research underway and reminded everyone of the impact that science can have on real lives.
The visit also showcased how PURA family fundraising is helping to advance this important work, from supporting dedicated researchers to enabling new discoveries that bring hope to the global PURA community.
Events like this reflect what makes the PURA Foundation unique: families, scientists, and supporters working side by side to drive understanding, collaboration, and progress.
💜 Because real progress is never made alone. It’s made together. Together, we're driving change.
PURA x The Florey 💜
To see Team PURA Marathon event photos visit our MelbMara 2025 Page
Community Outreach Kit and Digital Hub
The PURA Foundation Australia is developing a Community Outreach Kit to support families impacted by PURA syndrome. It will provide essential educational, emotional, and practical resources to help families navigate diagnosis, care, and daily life, offering reassurance and reducing isolation.
At the centre of this project will be the PURA Community Hub, a digital space that will link families to trusted resources, support, and services. It will provide access to peer networks, health and disability systems, and PURA-specific communities in Australia and worldwide, helping families feel connected wherever they live.
This project will align with national rare disease and disability strategies by improving access to support, especially for families in rural and underserved areas.
A key feature will be the inclusion of PURA Foundation Australia research outcomes in genetics, communication, and epilepsy, translated into family-friendly information to support informed decision-making. These will be developed across 2026-2027.
Funding for the Community Outreach Kit is required.
PURA Foundation Australia 2025
Research and Community Update
We were honoured to participate in the 2025 global PURA Syndrome Conference and share two presentations showcasing PURA Foundation Australia initiatives.
🎥 Australian Research Overview
Our first presentation highlights the exciting research initiatives underway in Australia, led by dedicated researchers and supported by the PURA Foundation Australia's commitment to collaboration, innovation, and better outcomes for those living with PURA syndrome.
🎥 Community Update - Australia
Our second presentation shines a light on the strength of our community, focusing on:
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Education and Advocacy – Empowering families and the rare disease community
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Awareness – Creating visibility and collaboration
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Community – Fostering spirit and belonging
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Support – Standing beside families on their PURA journey
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Research – Driving family-focused scientific and clinical work
We are proud to be part of a strong and united international community. Watch our presentations to learn more about our Australian research, our values, and our ongoing commitment to improving the lives of those with PURA syndrome.
Professor Michael Hildebrand and Mel Anderson
Research Partners
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