iiinova — where your digital self keeps evolving

PURA Foundation Australia @purafoundation.bsky.social · 05/10/2025

Thanks to CompactHome Lifts for supporting our team walking in the Chobani Fit Walk at the Melbourne Marathon next Sunday Oct 12th. Compact home lifts retail and retrofit world-class electric home lifts. If you’d ever consider a lift for your home, please consider supporting those that support us.

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PURA Foundation Australia @purafoundation.bsky.social · 03/10/2025

When we launched two years ago, our vision was simple: to raise awareness of PURA syndrome, to support families, and to drive research that will lead to treatments. Real progress is never made alone. It’s made 2-gether. Happy 2nd birthday PURA Foundation Australia. 💜 Let the bubbles begin… 🫧

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PURA Foundation Australia @purafoundation.bsky.social · 27/09/2025

💜 PURA x The Florey. In 2 weeks families, Foundation and scientists will gather to share research updates and Run As One. Together, we’re uniting the expertise of researchers with the lived experiences of families to accelerate life changing discoveries. #PURAfoundation #purasyndrome #TheFlorey

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PURA Foundation Australia @purafoundation.bsky.social · 27/07/2025

🏃‍♀️ Walk. Run. Give. Every Dollar Supports Research Progress 🧬 This August we’re taking part in the Sydney Marathon to raise vital funds for PURA syndrome research. Donate here 👉 sm25.grassrootz.com/purafoundation Every dollar goes directly towards new research, treatments and hope for families. 💜

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PURA Foundation Australia @purafoundation.bsky.social · 18/07/2025

📣 Only 2 weeks to go! A big THANK YOU to all the PURA families who have already joined our Communication Study. The study closes 31st July. All countries can be involved. 👉 www.purafoundation.au/communication Please register today. Because every voice matters. 💜

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PURA Foundation Australia @purafoundation.bsky.social · 26/03/2025

💜 Today is Purple Day – World Epilepsy Day 💜 March 26th is an international event dedicated to raising awareness about epilepsy. People wear purple to show support for those living with the condition and to encourage understanding of epilepsy and its impact on individuals and their families.

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PURA Foundation Australia @purafoundation.bsky.social · 01/03/2025

Rare Disease Day is dedicated to the millions of individuals and families around the world affected by rare diseases. Every story shared, every connection made, and every voice heard enhances our collective impact, creating needed change. #raredisease #purasyndrome #rare #rdd25 #community #together

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PURA Foundation Australia @purafoundation.bsky.social · 15/02/2025

PURA syndrome is a rare neuro-developmental disorder. The PURA gene is essential for the formation of pur-alpha, a protein which controls the activity of various genes, transport of different RNA molecules and generation of multiple proteins and is also vital for DNA replication. #pura #rare 💜

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PURA Foundation Australia @purafoundation.bsky.social · 07/02/2025

February 28th is Rare Disease Day, a day where we recognise the millions of individuals around the world living with rare disease. Although every diagnosis is different, one thing unites us all: the strength of community. #Purafoundation #community #purasyndrome #Rare #puraperfect #TeamPURA

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PURA Foundation Australia @purafoundation.bsky.social · 22/12/2024

Happy Holidays to the PURA families, clinicians, scientists, and support organisations around the world! We look forward to working together in 2025, in the advancement of research and treatments, and support for families of, and individuals with, PURA syndrome. 💜 #rare #puraperfect #teampura

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PURA Foundation Australia @purafoundation.bsky.social · 21/12/2024

PURA Foundation Australia, in collaboration with The Florey and University of Melbourne has begun research to search for more effective and possibly targeted epilepsy treatments for PURA patients. Looking forward to our work in 2025 with The Reid Lab. 💜 #TeamPura #purasyndrome #epilepsy #rare #DEE

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PURA Foundation Australia @purafoundation.bsky.social · 14/12/2024

Speech and language research for PURA syndrome 💜🧬 Surveys available in English, French, Dutch, German, Spanish, Portuguese, Italian, Chinese. To be involved email geneticsofspeech@mcri.edu.au For more details www.purafoundation.au/communication #TeamPURA #research #pura #rare #PURAsyndrome #speech

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PURA Foundation Australia @purafoundation.bsky.social · 12/12/2024

We are pleased to announce our first annual report, highlighting the journey,impact, and vision of PURA Foundation Australia. This report reflects commitment to transparency, accountability, and positive change www.purafoundation.au/about #rare #purafoundation #DEE #teamPURA #purasyndrome #research

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