Latest News

City to Surf

We have a team running for the Fragile X Association of Australia in the Sydney City to Surf. John Kelleher’s son, Patrick, is organising the team and is looking for anyone who would like to join in the run as well as people to sponsor the team.

If you’re keen to run, then here’s what you have to do–

Register at the City to Surf site (get onto the page, then press enter, then press register here, then start new entry)
Fill in all your personal details (follow the prompts)
Select the group you want to run/walk in – SH1 & SH2 (super keen) or back of the pack
Select the team – Fragile X Assoc. (contact Kyla Sherman)
Pay for registration

The Fragile X Association will supply t-shirts for those who would like to run in one (great way to promote the association).

If you would like to sponsor the team go to the Fragile X Everyday Hero page Get excited - why not feel good in more ways than one!

Fragile X Awareness Day July 22nd

Fragile X Syndrome Awareness Day 2008 Activities promoting knowledge of Fragile X and fundraising events are being held around the world for Fragile X Awareness Day.

Even if you are not directly involved in any events, this is a good opportunity to discuss Fragile X with friends and co-workers and anyone else that you have a chance to talk to. You could also suggest that they may like to make a donation to our Association via our donation form.

Thanks to Parents and Carers of Autism for creating this wonderful image and many more Fragile X and Autism graphics. If you too have a website you could help raise awareness by displaying one of the images that have been designed especially for the Awareness Day.

A Truly National Association

We are delighted to inform you that from July 1st 2008 the “Fragile X Association of Australia” became a truly national organisation.

The Association now incorporates the parent support organisations in New South Wales, Western Australia, and Victoria and the newly formed Queensland organisation. Whilst being part of the Association these organisations will also continue to operate in each state to ensure that members receive state based information and local support. It is to be hoped that in the future South Australia, Tasmania and the Territories will also be represented. All administration will be run through the Sydney office.

Reading “A Mother’s Story” on Page 15 of our June Newsletter reinforces strongly the urgent need to improve public awareness, professional, medical, therapeutic and educational expertise and government support for all those with Fragile X and their families. The plight of Marcus is tragic and yet not uncommon; we have all experienced, heard of or read similar stories. It is our sincere hope that one national association with one strong voice will enable us to be collectively far more effective than we have in the past so that the quality of life for people in Marcus’s position can be improved.

Welcome to Azma Hosken, Western Australia, and Maggie Bartle, Victoria, Mel Mikkleson, Queensland and Will Delaat. who have now joined our Committee.

A New Website

We will soon have a newly developed website up and running, which will reflect our National Association. Janine Peate has kindly agreed to incorporate her forums, currently at FragileX Online Australia, with our site; which will still be found at this same address of www.fragilex.org.au. In addition to public and member forums we will be including much more content and regular news updates.

This new format will mean that you will be able to participate in the site by talking with other readers via a comments system and the forums. You will be able to give us feedback and suggestions, ask questions, share valuable knowledge and support and even submit your own Fragile X related articles and images.

References:

Entrecards own blog announcement of the SezWho integration

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