A Victorian support group will roll out a new online resource for families, thanks to a $7000 grant from Endeavour Foundation Disability Research fund.
The Kew-based Prader-Willi Syndrome Association of Victoria will produce the much-needed resource to support newly-diagnosed patients with the rare genetic disorder and their families. Across Australia, the organisation supports about 400 families with a member affected by the disease.
It is one of three successful non-profit awards from the Endeavour Foundation Disability Research Fund announced recently by Endeavour Foundation CEO David Barbagallo.
“This is an essential resource for affected families and being online means it will be available nation-wide. It is an especially important tool for families with young children who may feel they have nowhere else to turn for information,” Mr Barbagallo said.
In its early stages, Prader-Willi Syndrome affects a child’s physical and mental development and growth. Symptoms include excessive eating with morbid obesity a potential consequence. There is no known cure for this condition.
Prader-Willi Syndrome Association of Victoria CEO Brett O’Farrell said the disease was not well understood and this meant there was very little information available to parents, carers and educators, especially those with newly-diagnosed children.
“Although we’re based in Victoria, we support families across Australia and regional areas. Demand for this information is vital for the families of those newly-diagnosed. This grant means we can provide information and support to them through our ‘Training without Borders’ program,” Mr O’Farrell said.
The program will include behaviour management training sessions for parents and carers, a 24-hour phone support line and online video resources.
Endeavour Foundation Disability Research Fund chairman Grant Murdoch said the grant was a cost-effective way to contribute directly to those affected by a condition for which there were few available supports.
“We at Endeavour Foundation understand the need for a resource like this, even though Prader-Willi Syndrome is a comparatively rare condition,” Mr Murdoch said. “We realise that for those families affected this is an important resource.”
This year The Disability Research Fund awarded $40,000 to fund research, endowed two awards of $5000 each to higher degree students and made a total of $20,000 available to non-profit organisations.
The Endeavour Foundation Disability Research Fund is a public benevolent institution that seeks to benefit the wider Australian disability sector as a whole, with an emphasis on people with an intellectual disability. Since 2012 the fund has distributed almost $300,000.
It is a capital-preserved fund, with donations invested and interest earned used to support Disability Research Fund annual grants. For more information go to: www.endeavourresearchfund.com.au/.
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