Author Archives: fragilex

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. Two trial sites confirmed: Melbourne and Brisbane.  For further information: Melbourne: Fragile X Alliance clinic (Dr … 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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New study on inadequacy of healthcare for people with intellectual disabilty

Fragile X Association of Australia (FXAA) is very disturbed by the results of the recent study by Professor Julian Trollor of the Department of Developmental Disability Neuropsychiatry (3DN)  UNSW on inequity in the health system for people with intellectual disability. Media … Continue reading

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Hear Dr Randi Hagerman’s webinar on health aspects for carriers of Fragile X

On Wednesday 1 February Dr Randi Hagerman, leader in the field of Fragile X, gave a webinar on health perspectives for carriers of the Fragile X premutation. Dr Hagerman spoke about how and why some carriers of Fragile X can have certain … Continue reading

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Ben’s Passion for Life Inspires

Ben Kalenjuk has won an Achievement Award 2016. Eugene Kalenjuk thinks he’s the luckiest Dad in the world! He and his wife Sharon are parents to three children – Ben, Emmalea and Gabriel. The oldest, Ben, was diagnosed with Fragile X … Continue reading

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