Author Archives: fragilex

June Newsletter | Passion for sport, Awareness month July, Guinness World Record for Fragile X, Health assessments

Our June newsletter covers a range of family stories, the work being done to increase understanding of Fragile X in the medical and allied health communities, and Fragile X Awareness Month in July. There is also a focus on a … Continue reading

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Membership renewals

Members whose membership is current to 30 June 2017 are invited to renew their membership of Fragile X Association for the financial year 2017-2018. To renew your membership: 1.   USE THE MEMBERSHIP FORM Print and complete the attached form. FXAA Membership … Continue reading

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Support needs of fathers of children with FXS – Australian study

      INVITATION TO FATHERS OF CHILDREN WITH FRAGILE X SYNDROME * If you are a father of a child or adult with Fragile X syndrome, we invite you to tell us about your experiences by participating in the … Continue reading

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Fragile X syndrome: from Medical Observer

This article, written by Dr Jonathan Cohen, Professor Sylvia Metcalfe, and Dr Alison Archibald provides an excellent overview of Fragile X syndrome and its associated disorders. Click here to open/read/download the article:  Fragile X syndrome Parts 1 and 2, from Medical Observer_2012 … Continue reading

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Home Among the Gum Trees: An American Family’s Amazing Australian Adventure

On one of our first confused and jet-lagged August mornings in Australia, I heard very loud chirps, hoots, and other unfamiliar noises coming from what I thought was our son’s ipad. I was about to tell him to turn down … Continue reading

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Newsletter – Focus on girls with Fragile X, Family Stories, Fundraisers, Family support, and more

Focus on girls with Fragile X, Family Stories, Fundraisers, Family support, and more….    our latest newsletter is a bumper edition! To read the newsletter: 1_ Read online on the issuu website. Clink the link below and then select the “full … Continue reading

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New clinical trials in Australia

New clinical trial in Australia – a skin gel for the treatment of symptoms of Fragile X syndrome in people aged 8-17 years old. 3 trial sites in Australia For further information: Melbourne: Fragile X Alliance clinic (Dr Jonathan Cohen), … Continue reading

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Harry goes surfing!

My son has done the equivalent of me doing a few jumps out of a plane. He certainly coped better than I know I would. No tears, no screaming hysterically. I’m writing this now while the pride I’m feeling in … Continue reading

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Accounts/Administration support role – part-time

About this role. We’re looking for an experienced Bookkeeper/Administrative Assistant to join our small team and manage the organisation’s accounts and financial processes and to provide administrative and project support for our operations.The position reports to the Executive Officer, with … Continue reading

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Surfboard fundraiser raffle winner!

The winner of the surfboard donated to Fragile X Association by Bede Durbidge, his wife Tarryn and Bede’s sponsors is Chanelle Avison from Queensland! Congratulations Chanelle! Here’s the board shortly after the winning ticket was drawn by Mrs Jean Hay, Northern … Continue reading

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