PURA Foundation Australia

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Melbourne, VIC
PURA Foundation Australia

A non-profit charity established for research, education & awareness of PURA syndrome in Aust and NZ

23/08/2026

🏃‍♀️ 7 weeks to go until the Melbourne Marathon Festival! 💜

There is so much exciting PURA research happening here in Australia, and we need your help to keep it moving.

👉 Fundraise or donate to PURA research:
https://melbmara2026.grassrootz.com/purafoundation

Every dollar raised by Team PURA helps fund research. If you’re part of Team PURA, now is the time to get your fundraising underway. Share your page with family, friends and colleagues and help us raise the funds we need to support PURA research in Australia. 💜

From our work with The Florey and Phenomics Australia on epilepsy, to the other research projects underway across Australia, our goal is to support research that will lead to better understanding and, ultimately, better treatments for people living with PURA syndrome.

7 weeks. One Team PURA. One goal. 💜

22/08/2026

Look at all of the new research happening in Australia for PURA syndrome!

PURA Foundation Australia is working with The Florey and Phenomics Australia to advance research into epilepsy in PURA syndrome. At the centre of all the research is a knock-in PURA mouse model developed by Professor Christopher Reid and his team at The Florey.

🧠 🔬 Through Phenomics Australia, we now have researchers using single cell RNA sequencing, spatial transcriptomics and histopathology with our mouse model to investigate what happens inside brain cells when a PURA variant is present and identify biological pathways involved.

This work is helping build a deeper understanding of PURA syndrome epilepsy, looking to identify new pathways that could lead to more targeted, precision treatments. 💜

The Florey Institute of Neuroscience and Mental Health The University of Melbourne

21/08/2026

We’re proud to share the video from "Ideas to Impact" showcasing the collaboration between PURA Foundation Australia, The Florey and Phenomics Australia.
https://www.youtube.com/watch?v=TMhLpiLZ1-Q

For our PURA community, this collaboration represents an important step forward in PURA epilepsy research.

The PURA mouse model developed by Professor Chris Reid and his team at The Florey Institute of Neuroscience and Mental Health is now providing an important foundation for new research, helping researchers investigate why epilepsy develops in PURA syndrome and explore more targeted treatments.

Through this partnership, national research infrastructure, specialist expertise and new technologies are coming together to investigate PURA syndrome and epilepsy in new ways. Stay tuned!

This is what collaboration can achieve, bringing together the expertise, infrastructure and resources needed to take PURA epilepsy research further. 💜

16/08/2026

💜 8 weeks to go! The Melbourne Marathon Festival is getting closer, team tees are ordered and 90 people have registered to be part of Team PURA. 💪🏃

https://melbmara2026.grassrootz.com/purafoundation

Now it's time to start fundraising! Every dollar raised by Team PURA helps support our epilepsy research. 🌟

Every cent counts. Whether you share your fundraising page with family and friends, post it on social media or simply ask someone to support you, every contribution helps.

Let's make these next 8 weeks count! 💜

09/08/2026

💜 70 people so far. One Team PURA.

🏃‍♀️Today is the final day to register and be able to secure your Team PURA tee. https://melbmara2026.grassrootz.com/purafoundation

Every purple tee helps make PURA syndrome more visible and gives us another opportunity to raise awareness. Because someone will see us. Someone will ask what PURA is.

And that conversation might lead to more support and awareness. That's why we want to create a sea of purple this October. 💜

02/08/2026

Mouse ears are on 🐭💜

That can only mean one thing. Something exciting has been happening behind the scenes.

We've been working with incredible research partners on an important new collaboration that will strengthen PURA research in Australia. By bringing together leading researchers, specialised technology and national research capability, we're creating new opportunities to better understand PURA syndrome epilepsy and accelerate research for our community. 🧠🔬

We're almost ready to share and we couldn't be more excited. To keep updated with our research announcements, register for our newsletter at www.purafoundation.au

Alone we are rare. Together we are strong. 💜

01/08/2026

On October 10th be part of something bigger. 💜

Join Team PURA Melbourne Marathon Festival 2026. Join by Monday August 10th to order your PURA tee. ⏰

🔗 Register today via https://melbmara2026.grassrootz.com/purafoundation

Walk or run alongside PURA families, researchers, scientists and supporters, all coming together with one shared goal: a better future for people living with PURA syndrome. 🏃

Every step helps raise awareness of PURA syndrome and the urgent need for more research. Join Team PURA this October.

Alone we are rare. Together we are strong. 💪 💜

30/07/2026

Some of the biggest breakthroughs in rare disease research don't begin in a laboratory. They begin with families.

💪 Families who share their experiences.
🔬 Families who participate in research.
💰 Families who raise funds.
🎁 Families who advocate for change.
💜 Families who never give up hope.

Every questionnaire completed, every dollar raised and every story shared helps researchers better understand PURA syndrome and brings us one step closer to better treatments and care. To every PURA family, friend and supporter, thank you.

Your support is helping build the knowledge, collaborations and research needed to create a better future for everyone living with PURA syndrome.
To find out more visit www.purafoundation.au

Together, we are making a difference. 💜

26/07/2026

💜PURA Education Day @ The Florey 🧠

Join us as PURA families, Foundation, scientists and clinicians come together to share the latest progress in PURA syndrome research.

For more details and to register visit: https://www.purafoundation.au/florey

📅 Friday 9 October 2026
🕘 9.00 am – 12.00 pm
📍 The Florey Institute of Neuroscience and Mental Health, Parkville

Hosted by our Head of Research, Professor Michael Hildebrand, the morning will feature updates from our PURA research, followed by a guided tour of the laboratories where our research is taking place.

If you're joining us for the Melbourne Marathon weekend, we'd also love you to walk alongside PURA families in the 3km Walk at the Melbourne Marathon the following day. https://melbmara2026.grassrootz.com/purafoundation

When we all work together, anything is possible. 💜

The Florey Institute of Neuroscience and Mental Health

25/07/2026

Who makes you step up? 💜 Ready to make a difference?

Every child deserves the chance to reach their potential. Those living with PURA syndrome face challenges most of us could never imagine.

🏃 Run for those living with PURA syndrome.
💜 Run for families searching for answers.
🔬 Run to help fund research that will change lives.

This October, join Team PURA at the Melbourne Marathon Festival.

Register to run, walk the 3km with PURA families or support Team PURA with a donation here:
🔗 https://melbmara2026.grassrootz.com/purafoundation

Together, every step and every dollar brings us closer to a better future.

Address

PO Box 90 Diamond Creek
Melbourne, VIC
3089

Telephone

+61418354149

Website

http://www.purafoundation.au/

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