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.

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 Note: There is a file embedded within this post, please visit this post to download the file. flyer for more information and to register.

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.

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.

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.

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

Dr Don Bailey (middle) with Australian Fragile X families

The National Fragile X Survey will continue until September 2009 and is the first national study of families in Australia and New Zealand who have a child/children with Fragile X. Dr. Don Bailey, an expert in Fragile X research at R.T.I (Research Triangle Institute) International , is directing the study. The confidential results from the survey will then be shared with Fragile X organisations, researchers and legislators to help amend policy and improve practice. This study is extensive and will take a substantial amount of time, however the results are imperative in forming a national picture of the needs of families with a child/children who has Fragile X. Participation in the study is voluntary and you have the right to stop at any time. In addition, you may choose to skip any questions which you don’t want to answer. If you are unable to access the internet to complete this online survey a confidential phone interview can be arranged through contacting Jocelyn on 1300 394 636. The online survey can be accessed by clicking on the following link:

https://fragilex.rti.org

If you have any questions regarding your rights as a survey participant or any other issues please contact Jocelyn on 1300 394 636.

May’s edition of Cleo, which is out now, features an interview with Megan Levy, a 23 year old Australian woman who has the full mutation of Fragile X. Titled “I have FRAGILE X SYNDROME!” Megan talks about her symptoms and how Fragile X affects her life in regard to employment, relationships and socializing. Well done Megan, thank you for sharing your experiences with us.

That’s Life Magazine published an article in Issue 10 March 2009 featuring Mel Mikkleson and family. A summary can be found on the That’s Life site: My Son’s X Factor. Mel was contacted by That’s Life after she featured in a story about Fragile X in her local newspaper. Mel who is on our committee and runs the Queensland support group always works hard to promote knowledge of Fragile X.

In The Australian newspaper an article published in February, Screening for fragile X sidelined, features discussion by Don Bailey, president of the US National Fragile X Foundation, clinical geneticist Mike Field and associate professor Sylvia Metcalfe, from the University of Melbourne and Murdoch Children’s Research Institute on the issue of screening newborns. John Kelleher, president of our Association, and his wife, Christine, talk of their own experiences and problems of receiving late diagnoses for their two children with Fragile X syndrome.

Although focussed specifically on adults in the workforce, the information is useful for everyone; to help us understand and deal with male and female adults with Fragile X, especially those affected mildly.

The article discusses strengths and learning difficulties, personality traits, sensitivities, socializing, communicating and tasks and gives useful pointers on how we can help to overcome or reduce difficulties.

This week’s edition of That’s Life magazine features an interview with Mel Mikkleson, who coordinates the Queensland Fragile X support group and whose son, Tom, is affected by Fragile X. She talks about his early development, her feelings on receiving the Fragile X diagnosis and its symptoms.

You can read a summary of the article on That’s Life website at My son’s X-factor. The article itself is on page 14, Issue 10, of That’s Life magazine which is out today.

Well done to Mel, on her excellent efforts in raising awareness for Fragile X.