The Child Development Unit at The Children’s Hospital at Westmead is participating in a clinical trial testing a new treatment for Fragile X syndrome in adolescents. The treatment is a capsule and the medication is taken twice daily for up to 16 weeks.

To be eligible to participate in the trial, patients must fit the following criteria:

• Be aged 12-17 in otherwise good general health.
• Have a previous diagnosis of Fragile X based on genetic testing (full mutation)
• Have a caregiver who spends on average at least 6 hours a day with the study participant and is willing to supervise treatment, attend all study visits and assist with study assessments
• Have a documented intellectual disability (IQ score less than 70)

The study lasts for a total of 20 weeks and includes a 3-week screening period, 16 weeks during which patients will receive study drug or placebo and a one week follow up. All patients will receive a placebo at some stage during the study.

If you would like more details on the trial, please contact Dr Natalie Silove at the Child Development Unit on 9845 2829.

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FREE ONE DAY SEMINAR

Canberra

Friday 15th April 2011

Fragile X Syndrome

Fragile X Association of Australia have arranged for the Fragile X clinic team from the Children’s Hospital at Westmead to present an overview of Fragile X Syndrome for Health Professionals, Educators and Families.  Update yourself on the latest information on this important cause of developmental disabilities, ADHD and ASD.

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 Canberra Seminar Flyer and a draft agenda for more details and the booking form.

Our Association supports the introduction of  the National Disability Insurance Scheme and the scheme’s “Every Australian Counts” campaign. The NDIS is a proposed system to change the way services for people with disabilities, their families and carers, are funded and structured; to provide them with the regular care, support, therapy and equipment they need.

The NDIS recognizes the high rates of physical, emotional and financial distress amongst many families. It  will allow people to make choices about the kinds of things that will best meet their particular needs.  The NDIS includes support provisions for children and adults including early intervention, home and family life, education and work.

Rallies in support of the NDIS are taking place all round the country. Please see the news page of the NDIS site for further information.

The scheme is the key recommendation to come from the Disability Investment Group which was set up by the government in April 2008.

What you can do to help the campaign for the introduction of NDIS

• Sign the petition
• Follow Every Australian Counts on Facebook and invite your friends to follow
• Follow Every Australian on Twitter and retweet their messages
• Take part in rallies

More Information

• Every Australian Counts
• Establishing a New National Disability Insurance Scheme on the FaHCSIA site.

Fragile X Awareness Day
22nd July 2010

Fragile X Awareness Day on July 22nd is to promote the awareness of Fragile X syndrome. The incidence of Fragile X can be significantly reduced through awareness and early intervention assists in providing support and strategies to
help improve the quality of life of a Fragile X child. In Australia, it is estimated that one child every week is born with Fragile X and twelve are born carriers.

Please support the Fragile X Association of Australia through Fragile X Awareness Day by holding morning teas, having sausage sizzles or just talking about Fragile X syndrome to your family, friends and colleagues.  Fragile X Awareness events can be held throughout July.

If you are holding an event please contact the Fragile X Association on 1300 FX INFO (1300 394 636) for information on fundraising.  We have posters available that were designed by RU Advertising and printed by Sydney IVF.  Also we have pens and ribbons for sale for $2. Just contact Jocelyn or Bernadette at the office to order your supplies.

If you are a school or organisation, please download our schools package [download id="28"]

Fragile X teams in 4 city fun runs!

• Run Melbourne July 18, 2010,: to date we have 4 participants in RunMelbourne on Sunday July 18.  Jannine Davey, Kelly Amore, Sarah Donahue and Brendan Fitzgerald. You can sponsor them through the Everyday Hero website:  

  http://runmelbourne.everydayhero.com.au/

• City2Surf August 8 2010: we have a team running in the City2Surf on Sunday August 8. If you are interested in being part of the team you will need to register in the City2Surf http://city2surf.com.au/. You can be part of the fundraising by creating your own fundraising account. Register on http://www.everydayhero.com.au/Fragile_X_2010 and click on Join this team in the top right hand corner of the fundraising page. You then create your own fundraising page and follow the prompts – the team password is ‘fxteam’.  It is a wonderful opportunity to meet other fragile X families and be part of the general atmosphere that the City 2 Surf creates.   At the conclusion, the Kellehers will run the usual BBQ (this is a fun occasion especially for our FX kids) at their home.  

•  Bridge to Brisbane August 29, 2010: The Bridge to Brisbane is on Sunday 29 August and we will be having a team.  

• City-Bay September 19, 2010:  The Adelaide City-Bay is on Sunday September 19 and there will be Fragile X  team.

We will be updating this post for the Brisbane and Adelaide fun runs once the teams have registered.

The Fragile X Association of Australia has entered a submission into the “Inquiry into the Provision of Education to Students with a Disability or Special Needs” being conducted by The NSW Legislative Council of the NSW Parliament. The submission was prepared by Dr Robyn Iredale, PhD, our Association’s Committee Secretary and Adjunct Associate Professor at The Australian Demographic & Social Research Institute,  Australian National University.

The Committee will investigate best practice approaches in determining the allocation of funding to children with a disability or special needs with a particular focus on what can be learned from the provision of education to students with a disability or special needs in Australia and overseas.

In announcing the inquiry, The Chair of General Purpose Standing Committee No.2, Ms Robyn Parker MLC said: “Interacting with the education system can be a frustrating and confusing experience for parents of a child with a disability or special needs, as they attempt to ensure that their child gets adequate support to reach their full potential.”

“An area of concern for teachers and parents alike is the adequacy of funding for children with a disability or special needs attending NSW schools. The Inquiry was established in recognition of their concerns”, Ms Parker noted.

The Committee will investigate best practice approaches in determining the allocation of funding to children with a disability or special needs. “We will take a close look at what can be learned from the provision of education to students with a disability or special needs in Australia and overseas. In particular, we will look at whether a student’s funding allocation should be based on their functioning capacity rather than their disability”, she added.

A number of other important issues are also covered by the terms of reference, including:

• Level and adequacy of current special education places
• Adequacy of support services for children with a disability in mainstream school classes
• Provision of a suitable curriculum for intellectually disabled and conduct disordered students
• Access to professional support services, such as speech therapy, occupational therapy, physiotherapy and school counsellors
• Adequacy of pre-service and post-service teacher training.

Further Information:

• FXAA’s submission to the Inquiry
• A list of all submissions to the Inquiry and Transcripts of Public Meetings can be found on the “The provision of education to students with a disability or special needs (Inquiry) page on the Parliament of NSW website.
• Inquiry Terms of Reference
• Article from the Business Spectator NSW private schools overfunded: inquiry

In November 2009 the Fragile X Association of Australia are hosting Fragile X Update seminars in Melbourne, Sydney and Brisbane.  Professor Randi Hagerman and Louise Gane from the M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute in UC Davis in America  will present the latest information on developments in treatment of Fragile X syndrome as well as what is happening in research into Fragile X syndrome. Topics covered will include behavioural and interventional issues for the person with Fragile X; health issues for the carrier; educational, new treatments and advances in research.  Professor Hagerman will also cover all types of clinical involvement in premutation and full mutation individuals and all types of treatment with emphasis on  targeted treatments.

Download the seminar registration form for more information.

Seminar Registration Form

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