Fragile X Association of Australia

30 Years Strong | Supporting | Sharing | Connecting | Informing

Understanding Fragile X

Fragile X syndrome is an inherited genetic condition that causes intellectual disability, and behavioural and learning challenges.

Fragile X Disorders

Fragile X-associated Disorders are a family of inherited conditions caused by alterations (expansions) in the FMR1 gene on the X chromosome.

Who Are We?

Fragile X Association of Australia is a member-based organisation and registered charity providing support to people living with Fragile X and their families.

Annual General Meeting

21 November 2021 3:00-4:00pm AEDT

Our AGM is always a good wrapup of our activities over the past year, a chance to look at the future, and the opportunity to welcome new Board members. This year the AGM will be on Zoom. If you would like to join us, RSVP support@fragilex.org.au

Supporting education and behaviours for children and adults with Fragile X: strategies for success

New series of short videos

Filmed in Australia with Dr Marcia Braden, these short videos were developed for educators, therapists and families supporting a child or an adult who has Fragile X syndrome. Dr Marcia Braden is an internationally renowned licensed psychologist and former special educator with years of experience in supporting people with Fragile X syndrome. Videos made with the support of a Qantas Foundation Side by Side Grant.

Video recording available soon

Strategies for Supporting children with Fragile X syndrome in Daily Living Skills Development

Bev Sher is a Speech and Language Pathologist and Bev Kadish is an Occupation Therapist. Both have specialist expertise in working with children who have Fragile X syndrome. Tried and tested practical tips and strategies to support skill development and strengths-based learning for children who have Fragile X. Such as: FIRST THEN visuals, READING tips, Using CLOSURE for tasks/behaviours, Some insights ion SENSORY SENSITIVITIES, Different techniques for MODELLING to support learning and behaviours, BACKWARD CHAINING to help in learning new skills, Whole-team communication: therapists, educators and the family. This webinar was supported by a grant from the Qantas Foundation Side by Side grant.

Covid Toolbox: Strategies for Maintaining Predictability and Regulation during unpredictable times

Now available to watch on replay

Creating structure, predictability and routine in daily life for people with Fragile X syndrome can reduce anxiety and lead to better outcomes in behaviours and learning. Our speakers provided practical and tried & tested tips for developing visual schedules and social stories, using a range of different media and styles; techniques for allowing an individual to have control in their interactions; the use of music and song to reduce anxiety; breathing techniques to lower anxiety; and sensory co-regulation.

Margaret's Story: The unfolding discovery of the Fragile X gene | Read online

By Prof Gillian Turner AO with contributions from other leaders in Fragile X discovery

2021 marks the 30th anniversary of the discovery of the Fragile X gene. This brief & very readable history of Australia's involvement in the discovery of the Fragile X gene is told from two perspectives. Firstly from the perspective of one of the Australian families who had been searching for answers to the cause of their child's intellectual disability. Then from the perspective of researchers involved in the international race to find the gene causing Fragile X syndrome. Drs Gillian Turner and Grant Sutherland describe their initial discoveries of a test for the fragile site on the X chromosome. Drs Randi and Paul Hagerman discuss their discovery of the conditions associated with Fragile X, which are FXTAS and FX-related Primary Ovarian Insufficiency. Prof Ted Brown provides an overview of Australian developments in reproductive carrier screening for conditions including Fragile X syndrome.

Webinar: Fragile X syndrome: In pursuit of a cure

Watch now on replay

This world-wide webinar on 22 July 2021 featured eminent scientists and clinicians speaking about current and future treatments for Fragile X syndrome. Speakers included Prof Randi Hagerman and many others who have been working in this field for many years, speaking about the current treatment landscape and the 10-year horizon. Organised by FRAXA Research Foundation for Fragile X World Day on 22 July.

Webinar on Fragile X syndrome | Clinical trials in Australia

Watch on replay

Our live webinar provided an overview of the clinical trials landscape in Australia, what's involved in participating in a clinical trial on treatments for Fragile X syndrome symptoms, and the regulatory processes in Australia for new medicines. Speakers included Australian health professionals who have years of experience in Fragile X syndrome treatments, both as clinicians and researchers.

Building knowledge

Join the Registry: Enrol online

The online International Fragile X Premutation Registry has been created to encourage research on the Fragile X premutation and ultimately lead to better care, and possible treatments, for females and males whose health is impacted by the premutation. The goal is to build knowledge about the Fragile X premutation. If you're a Fragile X premutation carrier, we invite you to join the Registry. The Registry is led by the US National Fragile X Foundation, the UC Davis MIND Institute, and is supported by Fragile X Association of Australia.

New series of short videos

Education and behaviours: strategies for success

Short videos filmed with Dr Marcia Braden developed for educators, therapists and families who are supporting a child or an adult who has Fragile X syndrome. Covering: 10 Thinks to Know about a person who has Fragile X syndrome; Education strategies; Understanding behaviours; The Cognitive Profile of Fragile X based on the neurobiology, and Supporting Adults who have Fragile X syndrome. Videos made with the support of a Qantas Foundation Side by Side Grant.

You can help us make a difference

Fragile X Association of Australia is a registered charity, funded by donations and fundraising. Donations of $2.00 and over are tax deductible. Your donation will help us support families affected by Fragile X, and to increase awareness of Fragile X associated conditions.

Make a donation

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30 Years Strong | Supporting | Sharing | Connecting | Informing

Understanding Fragile X

Fragile X Disorders