Dr David Godler and a team of leading researchers from Murdoch Children’s Institute have developed a innovative new test that could revolutionise the way Fragile X syndrome is screened and diagnosed.

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

Under the Australian Government’s new Better Start for Children with Disability initiative, children aged under six years who have been diagnosed with sight or hearing impairments including deafblindness, Down syndrome, cerebral palsy or Fragile X syndrome can register to access early intervention funding of up to $12,000 (to a maximum of $6,000 per financial year).

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.

The Fragile X Association has been invited by the Federal Government to join National Compact. The National Compact reflects the commitment of the Government and the Third (not-for-profit) Sector to find new and better ways to work together.

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.

The Fragile X Association has 4 great new designs for their Christmas cards this year.  You not only support the Association through buying our cards you also increase awareness of fragile X syndrome.  Each card has a brief explanation about Fragile X  and includes our contact details.

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

Fragile X Syndrome has been given a specific mention by the Prime Minister, Julia Gillard, in the proposed “A Better Start for Children with Disability” scheme. She says that “Children diagnosed with sight and hearing impairments, cerebral palsy, Down syndrome or Fragile X syndrome will benefit under the program”. Although there is as yet no cure for Fragile X, therapies and treatment can improve the lives of those affected, helping them progress.

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.

On Tuesday July 20th TV channels 7, 9 and the ABC did segments on fragile X syndrome on the Sydney news.  We were very pleased that our probono media advisor, Virginia Nichols, was successful in organising the media launch for Fragile X Awareness Day and wish to thank her for her enthusiastic support and the incredible amount of time that she dedicated to our cause.

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.