This is a really unique opportunity to get together, and to hear from the latest from experts Dr Marcia Braden, educational psychologist from the US, and Dr Jonathan Cohen, medical director of Australia’s only FX-specific medical clinic, Fragile X Alliance Clinic.
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The 2017 Annual General Meeting will be held on Sunday 26th November 2017 at 2:00-3:00pm, followed by afternoon tea.
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We are delighted to host a Fragile X Community Day in Hobart, thanks to the support of Calvary Community Council.
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It is estimated that 1 in 250 women are carriers of the Fragile X premutation. These women may be at risk of having a child affected by Fragile X.
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When should a GP consider a diagnosis of Fragile X, and why is a diagnosis important?
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Around 25% of women who are carriers of Fragile X will undergo Primary Ovarian Insufficiency / early menopause. If anyone has undiagnosed early menopause they should be screened for the FMR1 premutation.
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In this 3-minute video Cynthia reflects on the role a GP has in managing Dan’s health, and the challenges posed by Dan’s inability to communicate health issues to those around him.
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At a very early stage Mike and Helen Tozer could see the challenges with their son Josiah’s development – across the board Josiah was missing milestones. They were very concerned to understand the cause of the delay.
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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.
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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 project:
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Focus on girls with Fragile X, Family Stories, Fundraisers, Family support, and more… our latest newsletter is a bumper edition!
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This article, written by Dr Jonathan Cohen, Professor Sylvia Metcalfe, and Dr Alison Archibald for Medical Observer in 2012 provides an excellent and still current overview of Fragile X syndrome and its associated disorders.
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World Fragile X Day: 22 July: Celebrating individuals and families who are living with Fragile X and acknowledging the work being done to ensure early diagnosis and future treatments.
