As well as ordering cards for your own use please consider buying extra quantities to sell: for example at your local bookshop, milkbar, kinder, school or workplace.

To order your cards please download the Note: There is a file embedded within this post, please visit this post to download the file. and either mail your completed form to Fragile X Association, PO Box 109, MANLY, NSW 1655 or fax to 02 9976 2396, along with your payment.

The Strategy sets out a number of priority actions to assist Australians with disability, including mental illness, into work. It recognises the importance of education and training as a pathway to sustainable employment, and the role of employers in increasing employment opportunities for people with disability.

A copy of the Strategy paper is available for download from the Australian Workplace website.

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.

Highlights

• From November 6th to November 14th the Fragile X Association is having a series of Fragile X seminars and family
  forums with Professor Randi Hagerman and Louise Gane from the M.I.N.D. (Medical Investigation of Neurodevelopmental
  Disorders) Institute in UC Davis in America. Seminar Registration Form
• Fragile X Christmas Cards 2009 on sale
• Profile – Professor Kim Cornish – Fragile X researcher and Professor of Psychology at Monash University in Melbourne.
• National Fragile X Survey Extended – If you haven’t had time to complete the survey on line we have now extended
  the survey until the end of October.
• Article – Fragile X syndrome and reproductive genetics in the 21st century by Dr Ken Maclean Clinical Geneticist
• Article – Kids are still Kids by Azma Hoskins
• Committee member Doug Rogers is  Mosman Daily’s Father of the Year and one of 20 finalists for the NSW Community Father of the Year.
• Review of Fragile X Awareness Day
• News from the state support groups.

Read online or download and save: fx info Spring 2009

S

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.

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.

We are pleased to report that the Fragile X Association of Australia has been chosen to be the main beneficiary of the proceeds from the Wynnum Spring Festival. The festival held in Wynnum, in the Manly bayside area of Brisbane, started out 87 years ago as a Spring Parade and now includes a week long festival of events.

Festivities begin on 3rd October with a Baby Show and Tots to Teens Show. If anyone is interested in entering their child in either of the shows you can download the entry forms here: Baby Show,   Tots To Teens

From Friday 9th October to Sunday 11th October a whole host of fun and entertainment, for all ages, can be found on the Wynnum foreshore including:  rides,  games,  food, drink,  stage entertainment including music, bands and dancers,  fireworks, trade and community displays and other “sideshow” entertainment. Further details

On Friday evening there will be a Lantern Parade and Fireworks Display

Saturday 10th October is the Wynnum Spring Parade day.which culminates in a Fireworks Display. Details of the Parade

Special events on Sunday include The “Classic” car and bike Show “Wynnum on Wheels” and the Wynnum Spring Festival Church Service.

Many thanks to the Wynnum Spring Festival Association for choosing our Association as the main beneficiary and to Mel Mikkelsen for all her hard work in making this possible.

Download the seminar registration form for more information.

Seminar Registration Form

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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.