PURA Foundation Australia
Welcome
The PURA Foundation Australia is a non-profit charitable organisation, that has been established to provide national and local support systems for individuals diagnosed with PURA syndrome and their families, across Australia and New Zealand.
We aim to facilitate education and awareness, assist in the advancement of research and treatments, and provide support for families of, and individuals with, PURA syndrome.
Now Recruiting - Speech and language research for PURA syndrome
Significant speech and language challenges have been reported in individuals with PURA syndrome. These challenges may impact their ability to ask for basic needs, to explain pain and medical support required, and impact their learning at school. The PURA Foundation Australia, in collaboration with Translation Centre for Speech Disorders at the Murdoch Children's Research Institute - MCRI is beginning research focussed on examining speech and language of PURA syndrome in a systematic manner.
Key research aims are to characterise the speech and language abilities of individuals with PURA syndrome, to provide clearer diagnosis, prognosis and treatment planning, new education materials, and to inform speech and language outcome markers necessary for future clinical trials.
To be involved in this international research project, please email researchers at geneticsofspeech@mcri.edu.au
or complete the experession of interest form for researchers
For more details download the study flyer or visit the Genetics of Speech MCRI Website
2025 BRISBANE MARATHON FESTIVAL - June 1st 2025
Registrations are open for Full and 1/2 Marathon, 10km, 5km run and walk with TEAM PURA.
Join Team PURA for 2025 and help us raise funds for research.
The PURA Foundation Australia supports research into genetic epilepsies, led by Professor Chris Reid and Professor Michael Hildebrand. Their research to characterise the condition and locate effective and targeted epilepsy treatments for PURA patients is vital for our PURA community.
"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" - Professor Chris Reid, The Florey.
With this in mind, we invite you to donate to Team PURA and help us fundraise as we run, jog, wheel and walk our way through the best of Brisbane. Join us on the Story Bridge to write a new story for PURA syndrome.
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