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

Fragile X Awareness Day on July 22nd is to promote the awareness of Fragile X syndrome. The incidence of Fragile X can be significantly reduced through awareness and early intervention assists in providing support and strategies to
help improve the quality of life of a Fragile X child. In Australia, it is estimated that one child every week is born with Fragile X and twelve are born carriers.

Please support the Fragile X Association of Australia through Fragile X Awareness Day by holding morning teas, having sausage sizzles or just talking about Fragile X syndrome to your family, friends and colleagues.  Fragile X Awareness events can be held throughout July.

If you are holding an event please contact the Fragile X Association on 1300 FX INFO (1300 394 636) for information on fundraising.  We have posters available that were designed by RU Advertising and printed by Sydney IVF.  Also we have pens and ribbons for sale for $2. Just contact Jocelyn or Bernadette at the office to order your supplies.

If you are a school or organisation, please download our schools package Note: There is a file embedded within this post, please visit this post to download the file.

• Run Melbourne July 18: to date we have 4 participants in RunMelbourne on Sunday July 18.  Jannine Davey, Kelly Amore, Sarah Donahue and Brendan Fitzgerald. You can sponsor them through the Everyday Hero website:  

  http://runmelbourne.everydayhero.com.au/

• City2Surf August 8: we have a team running in the City2Surf on Sunday August 8. If you are interested in being part of the team you will need to register in the City2Surf http://city2surf.com.au/. You can be part of the fundraising by creating your own fundraising account. Register on http://www.everydayhero.com.au/Fragile_X_2010 and click on Join this team in the top right hand corner of the fundraising page. You then create your own fundraising page and follow the prompts – the team password is ‘fxteam’.  It is a wonderful opportunity to meet other fragile X families and be part of the general atmosphere that the City 2 Surf creates.   At the conclusion, the Kellehers will run the usual BBQ (this is a fun occasion especially for our FX kids) at their home.  

•  Bridge to Brisbane August 29: The Bridge to Brisbane is on Sunday 29 August and we will be having a team.  

• City-Bay September 19:  The Adelaide City-Bay is on Sunday September 19 and there will be Fragile X  team.

We will be updating this post for the Brisbane and Adelaide fun runs once the teams have registered.










 

Highlights

• Emeritus Professor Grant Sutherland at our Fragile X seminar in Adelaide.
• Australian and New Zealand Fragile X Family Survey(no.2).
• Searching for a cure for James.
• Fragile X testing.
• Adelaide workshop and clinic
• News from the States
• Fragile X Awareness Day

Read the full newsletter: Note: There is a file embedded within this post, please visit this post to download the file.

Highlights

• The Honourable Bill Shorten, the Parliamentary Secretary for Disabilities & Children’s Services meets with FXAA committee members.
• The National Library’s PANDORA Archive include our FX INFO newsletter in their archives.
• FX Carrier Support article.
• Hobart Seminar report.
• Australian and New Zealand Fragile X Family Survey
• Article by Marcia Braden, PHD – ‘Reality Check’. Marcia discusses popular parenting advice in relation to children with Fragile X.
• Funding Update
• Strategy Day report
• News from the States

Read the full newsletter: Note: There is a file embedded within this post, please visit this post to download the file.

The Committee will investigate best practice approaches in determining the allocation of funding to children with a disability or special needs with a particular focus on what can be learned from the provision of education to students with a disability or special needs in Australia and overseas.

In announcing the inquiry, The Chair of General Purpose Standing Committee No.2, Ms Robyn Parker MLC said: “Interacting with the education system can be a frustrating and confusing experience for parents of a child with a disability or special needs, as they attempt to ensure that their child gets adequate support to reach their full potential.”

“An area of concern for teachers and parents alike is the adequacy of funding for children with a disability or special needs attending NSW schools. The Inquiry was established in recognition of their concerns”, Ms Parker noted.

The Committee will investigate best practice approaches in determining the allocation of funding to children with a disability or special needs. “We will take a close look at what can be learned from the provision of education to students with a disability or special needs in Australia and overseas. In particular, we will look at whether a student’s funding allocation should be based on their functioning capacity rather than their disability”, she added.

A number of other important issues are also covered by the terms of reference, including:

• Level and adequacy of current special education places
• Adequacy of support services for children with a disability in mainstream school classes
• Provision of a suitable curriculum for intellectually disabled and conduct disordered students
• Access to professional support services, such as speech therapy, occupational therapy, physiotherapy and school counsellors
• Adequacy of pre-service and post-service teacher training.

Further Information:

• FXAA’s submission to the Inquiry
• A list of all submissions to the Inquiry and Transcripts of Public Meetings can be found on the “The provision of education to students with a disability or special needs (Inquiry) page on the Parliament of NSW website.
• Inquiry Terms of Reference
• Article from the Business Spectator NSW private schools overfunded: inquiry

Note: There is a file embedded within this post, please visit this post to download the file. – PDF File

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.

Note: There is a file embedded within this post, please visit this post to download the file. (PDF File)

Free One Day Workshop

Adelaide

Friday 23rd April 2010

Fragile X Syndrome

The Fragile X Association, through funding from 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 Adelaide Seminar Note: There is a file embedded within this post, please visit this post to download the file. flyer for more information and to register.

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.