The Fragile X Association of Australia would like to thank  Pages and Pages of Mosman, Sydney, and the Constant Reader of Crows Nest, Sydney for their support in selling our Christmas cards once again this year. Pages and Pages and the Constant Reader have been a great support to the Association through the selling of our cards over the years. 

You can also buy our cards directly by downloading the form and either faxing it to 02 9976 2396 or posting it to The Fragile X Association, PO Box 109, Manly NSW 1655.

“Modelling the Lifetime Social and Economic Impacts of Fragile X Syndrome and the Benefits of Early Diagnosis and Intervention”

 The December 2009 FXAA newsletter referred to an application to the Australian Research Council for a 3-year PhD scholarship, prepared by Professor Laurie Brown, from the National Centre for Social and Economic Modelling (NATSEM), University of Canberra, and Drs Robyn Iredale and Mike Field and Professor Tim Turpin from the FXAA.

Much to our delight we learned in July 2010 that we were successful. This is very gratifying as it will be the first research of this type on fragile X syndrome in Australia. The lifetime social and economic costs of people with full mutation and pre-mutation fragile syndrome will be quantified.

The ARC will provide $80,000 in scholarship funds, NATSEM will provide $46,500 in financial and other assistance and the FXAA has agreed to contribute $6,000 per year in cash, over three years, as well as provide in-kind support. The latter will consist of the provision of results from the analysis of the Australian and New Zealand survey data, referred to in three of our newsletters, and assistance with identifying suitable case studies to form the basis of the modelling process. Members of the FXAA will also serve on a steering committee for the project.

 We look forward to the outcomes of this project and to support from members. If you are interested in applying for this scholarship details can be found on the University of Canberra website –  http://www.canberra.edu.au/research-students and follow instructions for PhD scholarships 2011.

Fragile X Awareness Day
22nd July 2010

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 [download id="28"]

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.

Monday 19th October marks the start of Carers Week 2009. Carers Day 2009 is on Tuesday 20th October. Carers Week is aimed at celebrating and acknowledging the vital role carers play in our society whilst giving carers an opportunity to get together to share support and information..

Carers Australia CEO, Joan Hughes, recently launched a new Carers Week Website . There you can find details of the events that are taking place in your state throughout the week as well as participate in various forums which give you the opportunity to share your experiences and have your say. Events vary from state to state and include talks, morning/afternoon teas, luncheons, and various types of entertainment and relaxation sessions.

Carers Week 2009 is an initiative of Carers Australia. You can find out more about the services provided by Carers Australia on the: Carers Australia and Young Carers.

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.