On Tuesday July 20th TV channels 7, 9 and the ABC did segments on fragile X syndrome on the Sydney news.  We were very pleased that our probono media advisor, Virginia Nichols, was successful in organising the media launch for Fragile X Awareness Day and wish to thank her for her enthusiastic support and the incredible amount of time that she dedicated to our cause.

You can view the ABC segment  by clicking on this link:  http://www.abc.net.au/news/video/2010/07/20/2959418.htm 

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.

As well as keeping up with National Fragile X Foundation announcements and news on their website you can now follow their news via the new NFXF Twitter page FragileXnews If you would rather read the Twitter updates via a newsreader you can do so via the FragileX news feed. Website news feeds can also be sent to you by email using the online service feedmyinbox

Preliminary results from the US National Fragile X Survey are now available to view on the Fragile X Survey Site. If you want to keep up with further study announcements you can do so on the NFXF National Fragile X Survey page

A new Fragile X Handbook has been published. You can purchase the book from the Fragile X Alliance Inc, (03) 9528 1910,  in Australia or directly from the NFXF on their shopping page, where you can also view the table of contents.

The National Fragile X Foundation has been producing audio webcasts covering various aspects of Fragile X. They are available to listen to from their website on the Prior Audio Webcasts page

Topics to date::

• “Thriving Not Just Surviving: Family Self-Care” with Diane Simon Smith, M.P.H., MA, M.F.T. ,  Carolyn Krull Toennessen, Aerospace Industry Project Manager and Jayne Dixon-Weber, NFXF Support Services Coordinator.
• “Let’s Get Going: Toileting Ideas” with Karen Riley Ph.D. and Cindi Rogers
• “Coping with and Adapting to the FXS Diagnosis” with Brenda Finucane MS, CGC and Joe Garera, Parent and Leader of the Greater Cincinnati & Nth. Kentucky Resource Group
• “Educating Teachers and Students about Fragile X; Why it’s Important and How to do it” – Arlene Cohen and Lisa Kelley, parents of children with fragile X syndrome, share their experiences and techniques
• “ABCs of FXS: Steps for New and Improved Behaviors” with Fragile X specialist, Karen Riley, PhD
• “Fragile X Syndrome: Treatment of Difficult Cases,” – a three-hour webcast broadcast from Children’s Hospital Denver on July 20, 2007

If you want to be kept informed of upcoming webcasts as well as receiving other news from the NFXF please sign up for their email newsletter.

The Australian and New Zealand National Fragile X survey has been extended until the end of October

This study is the first national survey of families in Australia and New Zealand who have a child with fragile X. The results of the survey will be shared with fragile X organisations, researchers, and legislators to help change policy and improve practice.

Although many studies have been conducted with families of children with fragile X, this study will be the first in Australia and New Zealand to survey a large number of families. Your participation will provide researchers with a national picture of the needs of families with a child who has fragile X.

All information collected will be kept confidential. Your answers will be combined with the information we get from other families and any links to names or addresses will be removed prior to data analysis. Individual answers and names will not be published in any study report or disclosed to any individual or organisation.

ENROL NOW!

To participate, simply visit the website at https://fragilex.rti.org/ and complete the questionaire online or call 1300 FX INFO (300 394 636) to arrange an interview.

US Congressman Phil Hare (D-IL), Congressman Gregg Harper (R-MS), and Holly Roos of Canton, IL created the following Public Service Announcement to recognize Fragile X Awareness Day.

You can view this and many other Fragile X Videos on the YouTube Fragile X Group