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.
Developmental and Epileptic Encephalopathy Research (DEER) study for PURA syndrome
Through the Developmental and Epileptic Encephalopathy (DEE) Study, we aim to understand the common PURA syndrome clinical characteristics to determine possible treatment requirements and define outcome markers necessary for future clinical trials.
The main aims of this research are to define the full spectrum of epilepsy in PURA syndrome by describing and comparing both epileptic and non-epileptic events. The study will also explore related aspects such as medications trialled, developmental delays, cognitive challenges, and motor difficulties.
PURA individuals with and without epilepsy can be involved.
Individuals with a confirmed diagnosis of PURA syndrome or 5q31.3 deletion syndrome (including PURA) are encouraged to join this study.
Individuals with a confirmed diagnosis of PURA syndrome or 5q31.3 deletion syndrome (including PURA) are encouraged to join this study.
To be involved in this international research
project visit the DEE Research Page here.
2025 Sydney Mini 5km Marathon Saturday August 30th
Join Team PURA in Sydney this August!
We’re thrilled to announce our first-ever PURA Foundation Australia event in Sydney! Come walk the 5km with Team PURA and help raise awareness for PURA syndrome, ending with an unforgettable finish on the steps of the iconic Sydney Opera House.
Whether you walk, wheel, or cheer from the sidelines, your support helps fund vital research and increase connection for PURA families.
Date: Saturday August 30th 2025
To join Team PURA Sydney or donate visit https://sm25.grassrootz.com/purafoundation
Walk a mini 5km marathon with us in Sydney. Together we can achieve anything 💜
Now Recruiting - International 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 completing research focussed on examining speech and language of PURA syndrome in a systematic manner.
To be involved in this research, email researchers at geneticsofspeech@mcri.edu.au
or complete the experession of interest form for researchers
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.
For more details download the study flyer or visit the Genetics of Speech MCRI Website
This study closes End July 2025.
2025 BRISBANE MARATHON FESTIVAL June 1st 2025
What an amazing weekend it was, bringing Team PURA together for the Brisbane Marathon Festival. From the very first step to crossing the finish line, this event was so much more than a race. It was a true celebration of community, dedication, and shared purpose.
Every kilometre we ran, walked, and wheeled showcased our collective commitment to supporting one another and advancing vital research. Whether it’s testing endurance on the track or exploring new frontiers in research, we’re reminded that meaningful progress happens through collaboration.
Together, we’re not just chasing finish lines, we’re driving discoveries that make a difference. 💜
Research Affiliates
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