PURA Foundation Australia

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

TEAM PURA IS CURRENTLY THE TOP TEAM! 💜We are incredibly excited to see Team PURA sitting at the top of the Melbourne Mar...
04/10/2026

TEAM PURA IS CURRENTLY THE TOP TEAM! 💜

We are incredibly excited to see Team PURA sitting at the top of the Melbourne Marathon TEAM leaderboard, with $16,064 raised for PURA research! 👏
But we’re not finished yet.

Support Team PURA:
👉 https://melbmara2026.grassrootz.com/purafoundation

With 115 people walking, running and wheeling for Team PURA, let’s keep it going and bring it home for PURA research!

Every donation helps us continue moving PURA research forward.

GO TEAM PURA! 💜

💜 Families are at the heart of PURA Foundation Australia.Our Foundation was started by PURA families, for PURA families....
04/10/2026

💜 Families are at the heart of PURA Foundation Australia.

Our Foundation was started by PURA families, for PURA families. That lived experience continues to shape the work we do and the decisions we make.

Over the past three years, families have connected, shared experiences and supported each other through the many different stages of life with PURA syndrome.

Next weekend, our families will come together again in Melbourne, with the largest gathering of PURA families we have ever had in Australia. 👏

👉 Learn more about our Team PURA events across Australia:
https://www.purafoundation.au/fundraising

For a rare condition, opportunities to be together matter. To meet another family who understands, to share experiences and to build connections that continue long after the weekend is over.

PURA families are why we started, and why we keep going. 💜

🏃‍♀️ One week to go - 115 of us are taking on the Melbourne Marathon Festival as Team PURA. Donate here to help us rais...
03/10/2026

🏃‍♀️ One week to go - 115 of us are taking on the Melbourne Marathon Festival as Team PURA.

Donate here to help us raise funds for PURA research
💜 https://melbmara2026.grassrootz.com/purafoundation

We have put together all the important information for Team PURA, including where to meet, what to wear and everything you need to know for the day.
👉 https://www.purafoundation.au/melbmara26

Please take a few minutes to read through the details before next weekend. Meet at Melbourne Park Oval at 8.30am for the team photo.

🏃 We can’t wait to see everyone walking, running and wheeling as Team PURA! 💜

🌟 Community fundraising has directly initiated PURA research in Australia.Every donation, fundraising event and member o...
02/10/2026

🌟 Community fundraising has directly initiated PURA research in Australia.

Every donation, fundraising event and member of Team PURA has contributed to creating research opportunities that simply were not here three years ago. 💜

👉 You can help us continue growing PURA research:
https://melbmara2026.grassrootz.com/purafoundation

Your support has helped move ideas into research, establish new research models and build collaborations that continue to expand what we know about PURA syndrome.

What is particularly exciting is seeing those early investments continue to grow.

🔬 🧠 Research we initiated is now creating opportunities to ask new questions and investigate PURA syndrome in ways that were not previously possible.

This is why we fundraise.

To build the knowledge that is still missing, create opportunities for research and keep that work moving forward to bring much needed treatments. 💜

When we all work together, anything is possible.

Over the past three years, fundraising and donations have helped PURA Foundation Australia create opportunities for rese...
01/10/2026

Over the past three years, fundraising and donations have helped PURA Foundation Australia create opportunities for research, education, advocacy and support for our community.

Our biggest fundraiser of the year is now just days away.

🏃‍♀️On October 10th, 115 members of Team PURA will be walking, running and wheeling their way around the Melbourne Marathon Festival to raise funds for PURA research.

Can’t be there on the day? You can still be part of Team PURA by making a donation. 👉 https://melbmara2026.grassrootz.com/purafoundation

🌟 Donations of $2 or more are tax deductible in Australia.

Every donation helps us continue investing in research to better understand PURA syndrome and create opportunities for new treatments. 👏

Three years of growing together, made possible by the people who support us.
Thank you. 💜

🎂 Three years of PURA Foundation Australia.On 1 October 2023, PURA Foundation Australia began with a simple purpose: to ...
01/10/2026

🎂 Three years of PURA Foundation Australia.

On 1 October 2023, PURA Foundation Australia began with a simple purpose: to bring families, clinicians, researchers and our community together to help create a better future for people living with PURA syndrome.

Three years later, we have seen that community grow.

💜We have helped bring families together.
💜We have supported research.
💜We have contributed lived experience to research and advocacy.
💜We have worked alongside clinicians and scientists.
💜 And we have continued to speak up for the needs of children and adults living with PURA syndrome.

When we look at what has been built over the past three years, we are so proud of what can happen when families, clinicians and scientists work together.

Thank you to every family, researcher, clinician, supporter, volunteer and donor who has been part of the journey.

A little preview of what’s coming next weekend! 💜Team PURA made a quick visit to the MCG today for a photo shoot ahead o...
30/09/2026

A little preview of what’s coming next weekend! 💜

Team PURA made a quick visit to the MCG today for a photo shoot ahead of the Melbourne Marathon Festival.

🏃‍♀️ Fundraise or donate:
https://melbmara2026.grassrootz.com/purafoundation/team-pura

Next weekend, 115 members of Team PURA will be walking, running and wheeling their way around Melbourne to raise funds for PURA syndrome research.

We’re getting close to the start line. 💜 Can’t be there with us?
👉 You can still be part of Team PURA by making a donation.

115 people. One PURA community. One goal. 💜Team PURA now has 115 people walking, running and wheeling their way around t...
27/09/2026

115 people. One PURA community.
One goal. 💜

Team PURA now has 115 people walking, running and wheeling their way around the Melbourne Marathon Festival to help raise funds, understanding and awareness of PURA syndrome.

We’ve now raised $13,360 👏🏻 and have just 🌟$1,640🌟 left to reach our goal. Can you help us get there?

Can’t be there on the day? 👉 You can still be part of Team PURA by making a donation.

https://melbmara2026.grassrootz.com/purafoundation

Donations of $2 or more are tax deductible in Australia.

Together, we’re helping support research at The Florey Institute of Neuroscience and Mental Health into PURA epilepsy and build greater awareness about a condition that still has so many unanswered questions.

Every donation helps us keep moving this work forward. Thank you for being part of Team PURA. 💜

🌟 We’ve reached $11,433! With just 2 weeks to go, we need another $3,567 to reach our $15,000 fundraising goal for PURA ...
25/09/2026

🌟 We’ve reached $11,433!

With just 2 weeks to go, we need another $3,567 to reach our $15,000 fundraising goal for PURA epilepsy research.

💜 Can you help us reach the finish line?
https://melbmara2026.grassrootz.com/purafoundation

Donations of $2 or more are tax deductible in Australia.

Every donation brings us closer to our goal and helps keep this important research moving forward. Thank you to everyone who has donated, shared our fundraising pages and supported Team PURA so far.

It means so much to our PURA community. $3,567 to go.

When we all work together, we can achieve anything. 💜

🌟 In one week, PURA Foundation Australia turns 3. Three years ago, we began with families wanting to make a difference f...
24/09/2026

🌟 In one week, PURA Foundation Australia turns 3.

Three years ago, we began with families wanting to make a difference for people living with PURA syndrome. Since then, what started small has grown. 🌿

Families have connected. Researchers and clinicians have joined us. New research projects have begun. Our advocacy has grown. And so has our community. 👏🏻

There is still so much to do, but when we look back, we can see just how much has grown from that first small beginning. Three years of growing together. 🎈

On 1 October, we’ll celebrate our third birthday. From there, we’ll share some of the ways we’ve grown over the past three years and the people who have helped make it possible. 💜

Learn more about our work purafoundation.au

Address

PO Box 90 Diamond Creek
Melbourne, VIC
3089

Telephone

+61418354149

Website

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