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

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.

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 Individual answers and names will not be published in any study report or disclosed to any individual or organisation.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.

The People with Disability Australia (PWD) E-Bulletin is a monthly email newsletter that contains news and views on disability rights issues in Australia and internationally. Subscription to the bulletin is open to members and any other interested parties.

As well as keeping up with disability news the bulletin gives details of various government inquiries. Some give the opportunity for parents/carers to give their own views, express opinions or share experiences and to attend public hearings. If you want to have your say it is a good idea to keep up to date with such information.

This month’s edition includes articles on:

• NSW Parliament inquiry into substitute decision making for persons with disability
• NSW Ombudsman reports on review of individualised planning in large residential centres
• Shelter NSW conference looks at the housing crisis in Australia
• Victoria’s Guardianship laws to be reviewed.
• Women with Disabilities (WA) Inc now has a website
• Assisting domestic violence services to better support women with disability
• Protest at Telstra bill payment fee
• UN experts call for enhancing the protection of persons with disability

Current and back issues of the newsletter can be downloaded from their E-bulletin page although, rather than having to remember to regularly go to the site, I find it more useful to subscribe to the email edition.

People with Disability Australia (PWD) is a national non-profit, non-government disability rights and advocacy organisation.

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.

Making the Pizzas

We had a great roll-up for the pizza/fishing day (quasi Christmas function) with two current family members attending for the first time.  Unfortunately, the weather was not the best, windy and rainy and clearing in time for our departure!   Tim had fired up the pizza oven well in advance and Robyn had been busy making the bases all morning, prior to our arrival.  Some of the toppings were awesome and even Gordon Ramsey would have been more than impressed!   As it would have been impossible to fish from the jetty Robyn was very innovative with a bucket and fishing line on the deck, in order to find a winner of the magnificent fishing trophy.   David Cox-Taylor was the well deserved recipient.   The day was a great success.

Thanks Tim and Robyn

The prize winner!

The Autism Help Info site has been created to provide user friendly, practical and readily accessible information on Autism Spectrum Disorders for all, including persons with ASD. It aims to increase awareness of ASD and provide practical strategies and resources for all those who teach, care for or provide therapy to children with ASD. Sections include Early Childhood, Education, Health, Community and Recreation and Employment Support.

From the What is autism spectrum disorder? page you can access an audio visual ‘Autism Training Program’, an interactive explanation ‘What is Autism’ and Frequently Asked Questions.

The Education Sections covers such areas as Behaviour Management, Social Interaction, Communication, Obsessions and Inflexibility, Sensory Issues and Developing Skills. Documents from the Education Sections are available for download and printing on the Printable Files page. These include Tip Sheets, Teacher Resources, Social Stories and a wide range of articles.

The Early Childhood Visual Aids page provides a range of printable clip art which could be used in story boards or picture schedules.

This site is the initiative of Gateways Support Services Inc and funded by the Department of Human Services, Victoria, Barwon-South Western Region. Although some of the services provided are specific to the region, most of the site is of a general nature and much of it is relevant to Fragile X Syndrome.

DEEWR

The Department of Education, Employment and Workplace Relations launched a new website on 3rd December.

An Even Start – National Tuition Program

An Even Start is an Australian Government initiative to assist students who are not making satisfactory progress in literacy and numeracy. It provides $700 worth (a minimum of 12 hours) of tuition in reading, writing or numeracy for eligible students and can cover school based or private, individual or group tuition.

Eligibility is based on the 2007 national minimum benchmarks in literacy (reading and writing) and numeracy in years 3, 5, and 7 has been extended to also include children who were formally exempt from the 2007 benchmark tests including those with special needs.

As yet it is unknown whether the program will continue and cover those who do not meet the benchmarks in future tests. Its effectiveness in meeting the needs of students who struggle with literacy and numeracy is being independently monitored

Me Too Resource Manual 

The Me Too Resource Manual (PDF) is a self help guide for parents of children with a disability in Queensland written from a parent’s perspective. This Manual has been created by the Developing Foundation Inc – a support group by families seeking appropriate treatment for a family member with a brain injury or a developmental disability.