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

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.

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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The Fragile X Victoria support group is holding a coffee morning in Frankston on Thursday 11th December 2008 at 10.30 am.

This is a good chance to meet or to catch up with other parents living with Fragile X in the family over a cuppa and in a relaxed setting.

From 1 September, changes to Victoria’s Equal Opportunity Act (1995) came into place which give protection from discrimination to working parents and carers.

Under the amendments, it is unlawful for an employer to unreasonably refuse to accommodate a person’s responsibilities as a parent or carer. The changes apply in relation to job applicants and existing employees, as well as to to contract workers and partnerships.

The Act provides some examples of how these new rules can be implemented which include

• working part-time
• job sharing
• working from home for all or part of the working week.
• starting and finishing earlier or later

Practical guidelines to inform employers and employees about these changes and what they might mean are contained in the document Building eQuality in the workplace:Family Responsibilities – Guidelines for Employers and Employees which is available for download on the Victorian Government Human Rights Commission’s website. Carers Victoria helped to develop these guidelines and members of Carers Victoria will be sent a copy of this with their next newsletter.