Apple iPad2 Project Our partnership with the Rotary Club of Doncaster has enabled us to assist 26 school age PWS children, with their learning and education with an Apple IPAD2 in December 2011.
We have documented how this project has been of benefit to our families on the following clip.
Thank you to the Rotary Club of Doncaster for your support and generosity in helping our children.
PWS now included for the Better Start Initiative - 25 October 2012NDS welcomes the Australian Government's announcement that it will extend eligibility for the 'Better Start' initiative to children diagnosed with Prader Willi, Williams, Angelman, Kabuki Make Up, Smith-Magenis, CHARGE, Cornelia de Lange, Cri du Chat syndromes and microcephaly. Since the program commenced in July 2011, NDS has sought an extension of eligibility to all children with a need for early intervention; this expansion of eligibility is a step in the right direction. Currently, 'Better Start' is available for young children with Down syndrome, cerebral palsy, Fragile X syndrome, or a moderate or greater vision or hearing impairment, including deafblindness. To date, more than 5,000 children have registered and have received more than 53,000 early intervention services.
To fund the expansion, the Government will make an additional $13.4 million available over 5 years; this will provide services to about 1,200 extra children.
'Better Start' provides families of eligible children under the age of seven with up to $12,000 (up to $6,000 can be used in any one financial year) to access therapies such as speech pathology, audiology, occupational therapy, optometry, psychology, orthoptics and services of teachers of the deaf. Under 'Better Start', children with the listed disabilities are also eligible for Medicare items up to the age of 15, providing there is a treatment and management plan in place before the age of 13. Medicare items are available for up to four allied health diagnostic services and for 20 allied health services (in total) per eligible child.
From 1 January 2013, parents or carers of newly eligible children will be able to register their child by contacting the 'Better Start' Registration and Information Service on 1800 242 636. Further information will be available on the FaHCSIA website shortly.
Contact Information: Philippa Angley, National Policy Manager, NDS National, Ph 03 8341 4302, firstname.lastname@example.org
Events AGM - date to be announced
Media Prader-Willi Syndrome on 7pm Project
A thought provoking segment on children with Prader-Willi Syndrome, with a parents perspective. We need to find a cure and also provide support to the families. The families in the story are from Victoria.
Rowville family fights genetic disorder
Katie's daughter Chelsi has Prader-Willi Syndrome, a rare genetic disorder which is characterised by behavioural problems and an insatiable appetite. Her brother John, 13, looks out for his little sister.
"The Hunger" - A Report by Tim Noonan shown on the Sunday Night Program November 11th 2012
Click here for the story and to watch the video
|The PWSA of Victoria Web Site is intended to provide information only - not to diagnose or advocate particular treatment options. The Diagnosis and treatment of Prader-Willi Syndrome should be made through a qualified medical professional. Thus, it is strongly urged that patients do not change treatment without first consulting their doctor. The inclusion of any resource or link in the PWSA of Victoria Web Site does not imply endorsement.|