The publication of Dr Godler’s paper detailing these findings has sparked a flurry of media reporting about the testing, serving to increase the awareness of Fragile X in the community.

If you would like to read more, below is the media release from the Murdoch Children’s Institute as well as some of the resulting media.

The story was covered across Australia in both radio and print media  including stories in the Melbourne Herald Sun, Gympie Times, The Melbourne Age, ninenewsmsm.com.au, WA Today.com, Sky News.com.au, Newsmedical.net, bigpondnews.com, The Hobart Mercury.

Innovative test could revolutionise Fragile X screening and diagnosis

Gympie Times Thursday Jan 19 2012 – Aussie Fragile X Test

Herald Sun Thursday 19 Jan 2012 – Help_for_fragile_X_victims

The Age Thursday 19 Jan 2012 – Breakthrough_in_diagnosis_of_autism

From 1 July 2011, funding will be available for services such as speech pathology, audiology, occupational therapy, physiotherapy, psychology, orthoptics and others. Families will have until their child turns seven to use the early intervention funding.

The Better Start initiative also includes a one-off payment of $2,000 for eligible families living in outer regional and remote areas. As access to services is limited for these families, this payment will assist with travel, home visits and similar expenses.

Eligible children can register for the Better Start early intervention funding by contacting the Registration and Information Service, managed by Carers Australia, from 1 July.

A number of new Medicare items are also being introduced as part of the Better Start initiative. The new items will be available for children up to the age of 15 provided their treatment and management plan is in place before the age of 13. Families will be able to access the new Medicare items from 1 July 2011. The Medicare component of the Better Start initiative is being implemented by the Department of Health and Ageing and further information will be available at www.mbsonline.gov.au and www.health.gov.au

For further information about the Better Start initiative, please visit www.fahcsia.gov.au/betterstart, call 1800 989 530 or email Better.Start@fahcsia.gov.au

If you are a health professional in this field…

The Australian Government is seeking applications from early intervention service providers to join the new Better Start for Children with Disability (Better Start) Service Provider Panel.

Allied health professionals who are qualified and experienced in the disciplines of audiology, speech pathology, occupational therapy, orthoptics, physiotherapy or psychology are invited to apply for membership of the Panel as sole providers.

Multidisciplinary early intervention services and consortia which include or can demonstrate a professional relationship with an allied health professional from the listed disciplines are also encouraged to apply.

For more information about Better Start and the Panel, please visit www.fahcsia.gov.au/betterstart, call 1800 989 530 or email Better.Start@fahcsia.gov.au

The Better Start website

The Better Start website is now up and it gives all the information families will need to know about the Federal Government Initiative http://betterstart.net.au/steps-to-better-start/ Better Start provides services support for children who have the full mutation of fragile X up to the age of six.

This collaborative relationship will allow the partners to work on the challenges they face, build a stronger Third Sector in Australia and through this, drive innovation, wellbeing and sustainability in our communities.

If you wish to read more about National Compact visit the website where you can download a copy of the National Compact, and view updates as the National Compact action plans are developed. You can also follow progress with the Compact via Twitter – @nationalcompact.

You can order the cards 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.

Presents

Xmas Trio

Xmas Tree

Angels

The aim of the proposed scheme is to ensure that children who have disabilities which affect their development have access to intensive early intervention therapies and treatments. Children under six with a diagnosis of a listed disability will be eligible to receive up to $12,000 for early intervention services. A number of new Medicare funded diagnosis and treatment services will also be made available for children diagnosed before the age of 13 years with these conditions. Families will be able to access the treatment items up to their child’s fifteenth birthday.

The Better Start for Children with Disability initiative will be delivered on a similar basis to the Helping Children with Autism package which we discussed in an earlier article.

Further Information

• You can download the A Better Start for Children with Disability Fact Sheet and read the Media Release on the website of
  Bill Shorten MP, Parliamentary Secretary for Disabilities and Children’s Services: Children with disability given a better start.
• ABC video of the Prime Minister’s announcement of the scheme: PM promises cash for disabled children
• Carers Australia welcomes the Prime Minister’s announcements around better support for people with a disability and their families.

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

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

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.

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.