The Fragile X Association of Australia conducted the first national survey of fragile X families in Australia and New Zealand in 2009.  The study is an extension of a survey undertaken in the United States in 2008 by Dr Don Bailey from Research Triangle Institute (RTI).

In the attached newsletter we present a preliminary overview of the demographics of the sample and an overview of attitudes towards testing for FXADs. Two more overviews will be provided in subsequent newsletters: one on education and employment and the other on availability and quality of services. More detailed analysis will be placed on the website in due course.

The Australia and New Zealand Fragile X Family Survey – Preliminary Overview (PDF File)

Books, DVDs, CDs and handbooks on a range of Fragile X topics are available for purchase either via this site, the National Fragile X Foundation in USA and from Amazon. You can find a list of these and details on where to purchase them on our Books and Videos for Purchase page.

Updates:

“Fragile X Syndrome” is a stand-alone interactive CD-ROM integrating the genetics and clinical features of fragile X syndrome. It is produced by Associate Professor Sylvia Metcalf from the University of Melbourne and Dr Jonathan Cohen from the Fragile X Alliance. Version 2 (2009) is now available for purchase from the Fragile X Alliance Please see the order form.

A Medication Guide for Fragile X Syndrome,  by Michael R Tranfaglia MD, is available for download (pdf) from Dr Tranfaglia’s web site,  Dr Mike’s Psychiatry Blog,  for US$14.95. You can still purchase the  hard copy version via our site.

Free One Day Workshop

Hobart

Friday 12th March 2010

Fragile X Syndrome

The Fragile X Association, through the sponsorship of the Fred Archer Charitable Trust managed by Trust Company Ltd, have organised for the Fragile X Alliance team, led by Dr Jonathan Cohen, to provide an overview of Fragile  X syndrome.  This free workshop is open to health professionals, educators and families and carers of people affected with Fragile X syndrome.

All speakers are recognised experts in their field and will cover a wide range of management strategies relevant to developmental disabilities and autism spectrum disorders.

If you are interested please download the Hobart Fragile X Workshop flyer for more information and to register.

Wynnum Carols by the Bay are being held on  December 19th from 3pm till 9pm at Wynnum Esplanade (George Clayton Park Wynnum), Brisbane, Qld.

Thanks to the Wynnum Spring Festival Association, proceeds from the raffles on the night will be donated to The Fragile X Association of Australia. Some of our members will be selling tickets on the night so please come down and say g’day.

The event kicks off at 3.00pm with a mini carnival, food, drinks and entertainment. The Community Carol singing will begin at 7.00pm and the evening ends with fireworks starting at 8.30pm.

The Fragile X Association of Australia would like to thank  Pages and Pages of Mosman, Sydney, and The Constant Reader of Crows Nest, Sydneyfor their support in selling our Christmas cards once again this year. Pages and Pages have been selling our Christmas cards for many years and this is the third year that the Constant Reader have stocked our cards.

The Association would also like to thank all our other supporters who have purchased cards this year.  We now only have limited quantities left.

Many thanks to all who bought our Christmas Cards this year. We have now run out of stock. We will be selling them again next year.