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.

Fragile X Syndrome has been receiving more media coverage in Australia recently. This is excellent as increasing awareness and knowledge about the syndrome will lead to more people being correctly diagnosed and to an increase in resources available for research, treatment and education

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.

Mel Mikkleson and son, Tom,  are featured in a half page spread in the Wynnum Herald’s 7th January Edition – “Tom’s world is a fragile place to be”

Reporter Desiree Duncan says of Mel “A Wynnum mother’s instinct and persistance” led to a “diagnosis, a support group and now she hopes for a clinic”

The article goes on to describe her son, Tom’s, development, his testing and diagnosis of Fragile X Syndrome and some of its more common characteristics. (facial irregularities, developmental delays, anxiety disorders and difficulty controlling emotions, autism and ADHD like symptoms).

Despite how common a condition it is, Mel talks of how Fragile X is largely unknown in the community and shares her concerns on the number of children who may have been misdiagnosed because of this.

Although there is a new adult Fragile X clinic at the Mater Hospital in Brisbane there is as yet no Children’s clinic. Mel and her fellow support group team have been active in helping to raise funds so that this will eventually be possible.

Well done to Mel. This sort of publicity, as well as the other fantastic efforts she has been putting in will help to get Fragile X Syndrome more widely known and more kids will be correctly diagnosed.

Although the whole of the 7th January Edition of the Wynnum Herald is available for viewing online on at the moment, the article itself is not published to the  Herald site. You can view the article  via  PDF copy on our website.

In our latest newsletter is a page on Fragile X Awareness Day, held on July 22nd every year. Many of our members supported the Day with fundraising and other events but the efforts of two members should be noted.  Margaret Tappert, a Taree grandmother of Fragile X Syndrome children, contacted her local media and managed to have a great article published in the Manning River Times.  Thank you Margaret.

Michael and Heather Hart decided to increase awareness by having a Fragile X presentation and invited local professionals. They had a successful morning with many professionals invited.  The speech & language pathologist, Tracey Ellaby, gave a full presentation explaining how speech and language affects Fragile X children and the techniques used to enhance their ability.  Dr Mary Varughese, Grafton Hospital’s paediatrician, gave a talk on what Fragile X Syndrome means and how it can affect their lives.  Joshua’s and Jarrod’s school teachers, Melanie Pitt and Michelle McDonagh, from their support units at Grafton Public School, also assisted in answering questions from the public and explaining how they teach the boys and the techniques that work best for them.

The Salvation Army Church assisted the Harts with many of the ladies helping to prepare and serve the morning tea.  They also expressed concern for the family and wanted to understand how they could best communicate with the boys. Clarence Valley Community Programs (a respite organisation) also wanted to understand the syndrome better.

Last, but not least, Michael gave a great in-depth presentation from, how you get Fragile X Syndrome and the scientific facts, to where we are today and what it means for Joshua and Jarrod.

The Harts wonderful friend/helper/ABA therapist also expressed her knowledge and what she has learnt about ABA and how it has helped Jarrod become the boy he is today.

Heather and Michael would like to thank all those that assisted us in making the Fragile X Awareness morning a success.

Downloads of talks can be obtained from:

http://www.mixstatics.com.au/FXAwarenessDay2008.ppt

http://www.mixstatics.com.au/FragileXSyndrome_SpeechLanguageTherapy.ppt