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.

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

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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.

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.

In November the Fragile X Association of Australia are hosting Fragile X Update seminars in Melbourne, Sydney and Brisbane.  Professor Randi Hagerman and Louise Gane from the M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute in UC Davis in America  will present the latest information on developments in treatment of Fragile X syndrome as well as what is happening in research into Fragile X syndrome. Topics covered will include behavioural and interventional issues for the person with Fragile X; health issues for the carrier; educational, new treatments and advances in research.  Professor Hagerman will also cover all types of clinical involvement in premutation and full mutation individuals and all types of treatment with emphasis on  targeted treatments.

Download the seminar registration form for more information.

Seminar Registration Form

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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.

Good luck to all those who are raising funds for Fragile X Association Australia in the Sydney City2Surf which takes place this Sunday, August 9th.  Participants will be either walking, running or jogging the 14 km from Hyde Park to Bondi Beach. Thank you all for your fundraising efforts; with $3545 pledged to date.  It is not too late to donate. You are able to either donate through Everyday Hero – to one of the individuals listed below or directly via our Association page