PURA Foundation Australia

Just launched - Speech and language research for PURA syndrome 💜🧬 To be involved in this international research project, email researchers geneticsofspeech@mcri.edu.au Help us give PURA syndrome a voice. #TeamPURA #puraperfect #purafoundation #research #PURAsyndrome #speech

@ReidLab_Florey @TheFlorey @CureEpilepsy @EpilepsySocAus @snezNM @drkbhowell @geneticepilepsy Thank you for involving us in this amazing event 💜

@TheFlorey’s public lecture on World Epilepsy Day, “From genes to hope: Advancing treatments for severe genetic epilepsies”, highlighted advancement in childhood epilepsy research. Full video available: m.youtube.com/watch?v=MnHuQP… @CureEpilepsy, @EpilepsySocAus

💜 Today is Purple Day – World Epilepsy Day 💜 March 26th is a day 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 families. #pura

Join our Epilepsy public lecture this Wednesday March 26th to hear about how we are making a difference in childhood epilepsy research. @TheFlorey, @CureEpilepsy, @EpilepsySocAus, @epilepsy_fdn, @CureGABAa, @AmEpilepsySoc events.humanitix.com/public-lecture…?

@TheFlorey Thank you for your support. We look forward to an exciting 2025! 💜

Season's greetings from all of us at The Florey! 🎄 The Florey will be closed for the holiday period and will return on 6th January 2025. Wishing you and your loved ones a joyous holiday season.

@FiladelfiaGene1 @Elegardella @SBeniczky @EpiCARE_ERN @sopio_gverd @FrancescaFuria_ @AledoNeuro @SCN8AAlliance @TheCuteSyndrome @NeuRoberto_ @Sebasortizdelar @TorieRobinson10 Congratulations Elena 💜👏🏻

A great day for Elena Gardella and the #epilepsy community in Denmark 🇩🇰 and beyond 🌍 @Elegardella gave her inaugural lecture "A deep dive into monogenic 🧬 epilepsies 🧠: from precision diagnosis to personalized treatment 💊" as new #Professor of Translational Epileptology 🤩

Profs. Morgan, Amor & collaborators, inclduding #genetic #counsellors Christy Atkinson, Mariana Lauretta & Quan Lee, have published parent's views & experiences of #genetic testing for their child’s #CAS &/or #Dysarthria in @ejhg_journal 🧬 🔗Free access: rdcu.be/d2TAm

Dr Khaing Phyu Aung and Prof Chris Reid presenting their work at the #AES2024. @TheFlorey @CureGABAa @ReidLab_Florey

Researchers looking for families to be part of an international communication research study for PURA syndrome. #pura #rare #speech Surveys available in English, French, Dutch, German, Spanish, Portuguese, Italian, and Chinese. email researchers at geneticsofspeech@mcri.edu.au

@ReidLab_Florey @TheFlorey Amazing 🤩 Was wonderful to hear about your work.

Well done Amanda Hu and Chaseley McKenzie from the @ReidLab_Florey for presenting their work on epilepsy and SUDEP at the Melbourne Brain Symposium. @TheFlorey

Today we had the opportunity to attend the Melbourne Brain Symposium.💜 Inspiring to hear about the work being completed by the Florey Epilepsy Mission. Fern’s story is an inspiring example of how personal experiences can drive forward scientific progress. #epilepsy #florey #pura

Honoured to talk about Precision Therapies in #Epilepsy during the XXXII Romanian 🇷🇴 Epilepsy Conference 🧠🧬💊 Grateful for the opportunity to share insights on variant interpretation & new and emerging therapies for genetic epilepsies 💜 #StrongerTogether @EpiCARE_ERN

What a great honour to host Prof Nadia Rosenthal from @jacksonlab in our Allan and Maria Myers Lecture – highlighting the possibilities of creating preclinical mouse models that reflect humans' genetic diversity. Thank you Prof Rosenthal for coming to The Florey! 👏

💜PURA syndrome: speech and language study We are looking at #speech and #language in people with #PURAsyndrome. ⬇️ See flyer for eligibility and details. Interested? Register here: redcap.link/Speechgenetics

@MCRI_SpeechLang So excited to commence this research with you! 💜💬

Official video & campaign launch marks 100 days until #RareDiseaseDay! Watch the video featuring RVA Ambassador, Tammie Rees, & her daughter Ava. More: rarediseaseday.org

The term ‘developmental and epileptic encephalopathies’ (DEEs) refers to a group of severe and rare types of #epilepsy that usually begin during infancy or childhood. For further information, please visit bit.ly/3X7t4Kg

Congratulations Professor @ingridscheffer on receiving the Peter Bladin Award, our society’s highest honour. It is richly deserved 💐 Your work has changed the landscape of epilepsy care and research in Australia and internationally - and will continue to do so moving forward!👏🏽