Author Archives: fragilex

Our newsletter for October 2018

Our news and events for 2018, to the end of October. Covering the visit to Australia by Prof Randi Hagerman, a new FXTAS clinic in Melbourne, a clinical trial in Australia, fundraising and family stories.       FX Info_October … Continue reading

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Clinical trial in Australia: boys & girls with Fragile X syndrome

From September / October 2018 Zynerba Pharmaceuticals is running a clinical trial in Australia in boys and girls with Fragile X syndrome, aged between 3 and 17.  The trial sites are in Melbourne, Brisbane and Sydney.  This a followup to … Continue reading

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FXTAS clinic in Melbourne

A Fragile X-Associated Tremor Ataxia Clinic has recently opened at AlfredHealth in Caulfield, Melbourne. The clinic offers help in the diagnosis and management of people affected with FXTAS, and also has a research focus. The clinic operates on a Friday … Continue reading

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Annual General Meeting 11 November

Notice of Annual General Meeting of Fragile X Association of Australia Inc DATE:                   Sunday 11 November 2018 TIME:                     2:00—3:00 pm PLACE:                Fragile X Association of Australia Suite 204, 20 Dale Street,  Brookvale   NSW  2100 Followed by Afternoon … Continue reading

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New videos: Q&A with Prof Randi Hagerman

In August and September 2018, we hosted a series of presentations by Professor Randi Hagerman, Medical Director of the MIND Institute of UC Davis, California. LECTURES:  Dr Hagerman’s lectures were videod and will be available on our youtube channel soon. Q&A … Continue reading

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Annual General Meeting and Call for Board nominations

Annual General Meeting 2018 Our members and friends are invited to our 2018 Annual General Meeting. Date:  Sunday 11 November 2018, 2:00-3:00pm Place:  Suite 204, 20 Dale Street, Brookvale NSW 2100 RSVP:   wendy@fragilex.org.au Members outside Sydney can join the meeting by … Continue reading

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The Latest on Fragile X | Dr Randi Hagerman in Melbourne 27 August & Sydney 3 September

It was a great pleasure to welcome Dr Randi Hagerman back to Australia!   Dr Hagerman was last here in 2015. Dr Randi Hagerman presented on the Latest on Fragile X  –   in Melbourne at the Royal Children’s Hospital on 27th August, and in Sydney at the … Continue reading

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Pre-conception carrier screening trial announced by Federal Government

One in 20 Australians carries at least one altered gene that could cause cystic fibrosis, SMA or Fragile X syndrome in their children. On 8 May 2018, the Federal Government announced a $500 million pledge to the Genomics Health Futures Mission, … Continue reading

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Prof W Ted Brown has joined our Board

The Board of directors of Fragile X Association is delighted to welcome Prof Wm Ted Brown, who has joined the Board. Prof Brown has been working in the fields of Fragile X syndrome and autism for over 35 years.  He … Continue reading

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New Videos! Dr Marcia Braden on Daily Living Skills and Supporting Learning

In November 2017, Dr Marcia Braden, eduational psychologist, was in Australia as a guest of Fragile X Association, to run some clinic assessments for children with Fragile X and present at two workshops.  The workshops, in Brisbane and Hobart, were … Continue reading

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