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.

Print out this article

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 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"]

• 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 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

Download the seminar registration form for more information.

Seminar Registration Form

.

  After the success of last year’s fundraising, the NSW team are again organising a Fragile X City to Surf team this year. Last year we were in the top 10 fundraisers and raised over $8000. This was a great achievement,so lets see what we can do in 2009! Getting involved in this event on August 9th would be a great opportunity to raise funds as well as providing an enjoyable (hopefully sunny) occasion for all involved.

If you are interested in being part of the team you will need to register in the City to Surf . Additionally, you can create your very own fundraising account as part of the Everyday Hero organisation.  Remember to put in the team password of cgk174 on the next page after creating your own page.  Go to Everyday Hero and register. 

After creating an account you can see the team’s participants and watch  fundraising figures grow as more kind people donate.  Through forwarding your fundraising webpage to your friends, colleagues and families they can donate a chosen amount to sponsor you in the run, from $5 to $500, every dollar raised is an excellent accomplishment in itself.

When you register we will also send you one of great Fragile X syndrome t-shirts  to wear on the run.  Last year’s team made a big impression with these black t-shirts. Just contact Christine or phone Jocelyn on 1300 394 636.

Our Queensland team are also having an active fundraising occasion, the Bridge to Brisbane on the 30th August 2009 .

Mel is also organising a Fragile X team to enter this event which will see an anticipated  40,000 participants of all ages and fitness levels take part in Queensland’s biggest annual fun run.  You don’t need to be an elite sportsman to join in on the 5km course, just run or walk your way to the finish line.

Please contact Mel Mikkelsen  if you are interested in promoting Fragile X awareness in this way and also help us to raise funds to support families affected by Fragile X syndrome. 

South Australia has also fielded a team in the City-Bay fun run on the 20th September. Kimberly and Mark Scott are running to raise awareness in South Australia.  You can support them by going to their Everyday Hero webpage to sponsor Kimberly.