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
Finding strength in community - Herald Sun Sunday 13th October
Today (SUNDAY), they will band together to run, jog, wheel or walk the Melbourne Marathon to raise funds for desperately needed research into the syndrome.
In just the first year since it was founded the new PURA Foundation Australia has self-funded two key studies. Now it is working with the Murdoch Children’s Research Institute to research speech and communication for PURA syndrome.
“When you’re incredibly rare, your strength is in coming together,”
“Community is everything and we’ve built a community that can work together.”
Families, Clinicians, Scientists and Foundation as one community.
Read or download the article here.
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