Thank you to all our members who took part in Awareness Month activities.  Thank you also to VivaCommunications who were tireless in promoting our cause to the various media outlets which resulted in extensive media coverage in July. We are pleased that Australian TV, radio and newspapers helped promote Fragile X Awareness and the upcoming Carrier Study so widely.

August saw the official opening of our Association’s new headquarters in Manly. The opening was attended by Manly MP MIke Baird and Manly Mayer, Jean Hay, medical experts and families impacted by Fragile X.

Here is a roundup of the major media coverage:

TV Coverage

10 National News  Mel Mikkelsen talks about Fragile X Syndrome. It features her son Tom and one of our Board Members, Dr Helen Heussler.

6.30 with George Negus starring Leah Pitt and son Lachlan, Jonathan Cohen and son Michael.

Sky News – Researchers to study mysterious syndrome with Christine Kelleher

Christine being interviewed on Sky News

Jocelyn at the studio lending moral support

Radio

• ABC World Tonight Audio and Transcript  board members Professor Kim Cornish and Christine Kelleher talk about the upcoming, world first, nationwide study of male and female carriers of Fragile X. There are around 70,000 carriers of Fragile X in Australia.
• Mornings with Dugald Saunders – interview with our Association President, John Kelleher

Newspaper Articles

• Researchers Tackle FX Syndrome Mysteries Sydney Morning Herald with the same article republished by ninemsn and yahoo news Queensland
• Brisbane Times Do you have Fragile X syndrome without knowing it? Greg Peate talks about his stepson, Peter, and adopted son, Geoffrey, who are both affected by Fragile X Syndrome.
• Manly Daily Carers given X factor for common disability
• Toowoomba Chronicle Doctors unite to unravel autism gene Associate Professor Julian Trollor, University of New South Wales, discusses Fragile X Carrier symptoms. Simone Zaia talks about her efforts in trying to conceive.
• Manly Daily’s coverage of the Official opening of the Fragile X Association’s new headquarters at Suite 6, Level 3, 39 East Esplanade,Manly NSW 2095
• Senator the Hon Jan McLucas’s Media Release Fragile X Awareness Month recognised today

Online Articles

• The Australian Healthcare and Hospitals Association (AHHA) Fragile X gene determines late-onset dementia

Although not specific to Awareness Month in Australia we must mention the wonderful National Fragile X Foundation Awareness 2011 site. The site contains over 150 personal stories which show the many ways that those with Fragile X are all unique, self-determining individuals.

New Resources added to our documents for download section:

Fragile X Syndrome Fact Sheet – Learn basic facts about fragile X syndrome. *

Families and Fragile X Syndrome
This booklet from the National Institutes of Health for parents and families explains fragile X, its causes, its symptoms and associated disorders, and its treatments. The booklet also provides snapshots of many families affected by this disorder. *

Do I have Premature Ovarian Failure (POF)?
This booklet from the National Institutes of Health for women and their families explains POF, its possible causes, its symptoms, and its treatments and explains some research on the condition. *

NIH Research Plan on Fragile X Syndrome and Associated Disorders

This scientific plan from the National Institutes of Health (NIH) outlines research goals and objectives on fragile X syndrome and related disorders for the NIH Institutes, including research related to fragile X syndrome and its associated disorders.*

* From Centers for Disease Control and Prevention

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) website includes a very useful section on Fragile X including:

• Facts about Fragile X Syndrome – which includes links to articles on Causes, Inheritance and Treatment (Therapeutic, Educational, Early Intervention)
• Associated Disorders
• Data & Statistics
• Articles
• Free Materials -downloadable fact sheets and booklets
• The video below:

What Causes Fragile X Syndrome

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Fragile X Syndrome – Running Time: (2:31)
Source: National Center on Birth Defects and Developmental Disabilities (NCBDDD)

Visit The NCBDDD Fragile X Section

Dr Michael Field and Professor Kim Cornish have kindly given us permission to upload an article they wrote as an invited contribution to the upcoming website physicalasanything.com.au.

The article gives an excellent overview of Fragile X Syndrome and includes sections on:

• Inheritance
• Challenges and Strenths of Fragile X Students
• An explanation of X-Linked Inheritance
• Female and Male Carriers

Download the Fragile X Syndrome Fact Sheet

Authors

Dr Michael Field
Clinical Geneticist
Genetics of Learning Disability Service
(Incorporating the NSW Fragile X Service)
Royal North Shore Hospital, St Leonards, NSW Australia

Professor Kim Cornish
Developmental Neuroscientist
Head, Discipline of Psychology
Head, School of Psychology and Psychiatry
Monash University, Victoria, Australia

An Australian Study of families who carry the fragile X gene

The Australian Research Council (ARC) has funded a 3 year study to help families, health professionals and educators understand how being a carrier of fragile X impacts on Australian families.

For many years, individuals who carried the fragile X gene (carriers) were assumed to be completely unaffected by any challenges facing individuals who had fragile X syndrome. In recent years a number of overseas studies of families suggest that the carriers may have subtle profiles of strengths and challenges that include very good visual and verbal skills but difficulties in decision making and short term memory skills. However, these studies were only conducted in male carriers and we do not know whether women who carry the fragile X gene display a similar profile. Professor Kim Cornish, Head of School of Psychology and Psychiatry, Monash University, is leading this new Australian study.

We also do not know if there exists different profiles in women who carry the fragile X gene and have a child/children with fragile X syndrome compared to women who carry the gene but do not have a child with fragile X syndrome. For the first time, in one Australian research study, we will be able to identify commonalities in profiles between men and women who carry the fragile X gene and also highlight important gender differences.

• In Australia we estimate that hundreds of families will have a member who is a carrier of fragile X.
• It is vital that we gather as much knowledge as possible about being a fragile X carrier across the lifespan so we can inform all families about what to expect and how best to intervene.
• Understanding how motor skills, language skills, decision making skills and your well-being changes with age will provide invaluable information that will help future generations.

The Step Ahead project is based at Monash University in Melbourne and they are looking for carriers of fragile X syndrome to participate in their study. Travel costs and additional costs incurred because of your participation will be covered.

If you are interested in the Step Ahead Project please contact Claudine Kraan at the School of Psychology and Psychiatry at Monash University on 03 9902 4162 or claudine.kraan@monash.edu. Alternatively, you may contact Dr Darren Hocking at the School of Psychology and Psychiatry at Monash University on 03 9902 0467 or darren.hocking@monash.edu.

July is Fragile X Awareness Month. The official announcement of this month is set for Tuesday, July 26, 2011.

To learn more about the world’s leading inherited cause of intellectual disability and further ground-breaking research into the condition, or to speak to doctors, patients and families affected by Fragile X syndrome on Tuesday, July 26, contact Denise Vrontas or Kirsten Bruce from VIVA! Communications on 02 9884 9100 or 0414 524 383 / 0401 717 566.

This year we have decided to have the whole month of July a time to raise awareness of Fragile X.  With the Better Start Initiative http://betterstart.net.au/ beginning on July 1st it is appropriate to give the month of July to recognising the importance of raising the profile of this relatively common but largely unheard of syndrome.

This year the actual Fragile X Awareness Day on Juy 22nd is on a Friday which makes it perfect for morning teas, casual workdays and lunches. We encourage you and your work or social community to celebrate and recognise this day at a grass roots level in a casual and friendly fashion to be the host of an occasion like this.  Once again we have posters and brochures, pens and ribbons which we can supply for your fundraising so please contact us if you would like any of these items as well as the guidelines and an authority to fundraise.

Last year we had tremendous publicity with coverage on national television as well as many local media. To view this coverage  click here.

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.