June / July 2018
April / May 2018
It’s not Prada, it’s ‘Prader’
Rare genetic disorder – Prader-Willi Syndrome
Comprehensive Training Event Announced for Australia
Prader-Willi Syndrome – the rare genetic disorder that can make people feel like the weight of the world is on their shoulders, as opposed to the type of Prada proudly carried on your shoulder.
You may have heard of the symptoms, but may not be familiar with the name. Prader-Willi Syndrome (PWS) is caused by errors or deletions of genes related to chromosomes 15, affecting roughly one in every 15-20,000 births each year worldwide, with approximately 800 people in Australia affected.
The hypothalamus (part of the brain which controls hunger, thirst and hormones related to growth and sexual development) does not function properly in people with PWS. This disruption in functioning causes uncontrollable hunger, lack of satiety, stunted growth, under developed sex hormones, poor sleep cycles and much more. Virtually no system within the body and mind is left untouched when this tiny amount of genetic material is found to be missing, duplicated, or altered. Without the right support, the average lifespan for a person with PWS is between 20-30.
Having had a long and outstanding relationship with two of the most well respected and recognised PWS professionals in the world, Interaction is excited to announce that in October 2017 we will be bringing Dr. Hödebeck-Stuntebeck and Dr. Soyer to Australia. They will provide comprehensive training to professional carers (Sydney), and seminar events for anyone who is involved in the PWS community (Sydney, Melbourne, Brisbane).
The ‘Understanding Prader-Willi Syndrome’ training structure and content has been widely and successfully implemented across Europe and other parts of the world, with Interaction to be the first organisation to bring this opportunity to the Australian PWS community.
“PWS is rare – not nearly as well known – yet just as important as any other genetic disorders”, says Craig Moore – Interaction CEO. “Interaction has recognised the need for quality PWS services and training for many years, and follows internationally recognised best practice procedures when it comes to providing specialised accommodation, supports and behaviour & allied health services to people with Prader-Willi Syndrome.”
Interaction continues to raise awareness, along with creating and implement strategies to ensure that people with PWS can live long and healthy lives. To support this, we are expanding our PWS services through the ‘Empowered Living Apartments’ accommodation model, bringing together the PWS community, and jointly working with professionals and advocates towards a better future for people with PWS and their family/carer network.
For further information and registration to attend one of the ‘Understanding PWS’ events, please click here.
Interaction Disability Services is a values based, not for profit community organisation supporting children and adults with disability since 1979.
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