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.

Watch on REPLAY now

Understanding Anxiety and Fragile X syndrome

Internationally renowned FX expert, psychologist and educator Dr Marcia Braden PhD joined us live from Colorado for a deep dive on ANXIETY as a key trait for people who have Fragile X syndrome. Causes. Triggers. Responses. Supports that help. An informative session for parents, carers, therapists, educators, disability support workers - everyone supporting a person with Fragile X syndrome. Watch the video recording on our youtube channel.

Christmas Cards 2021

Order online

Sending Christmas cards is a lovely way to reach out to family and friends we have not seen for some time. Our Christmas card designs feature the Fragile X Association of Australia logo and the message inside reads "Season's Greetings and best wishes for the New Year".

The year in review

Check out our Annual Report 2020-2021

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. If you didn't join us on 21 November for our Zoom AGM - you can still catch up with our news by checking our our ANNUAL REPORT.

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.

Watch now on replay

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

Tried and tested practical tips and strategies to support skill development and strengths-based learning for children who have Fragile X. Allied health professionals Bev Sher and Bev Kadish share tips on 7 key areas impacting living skills and learning for children who have Fragile X: 1. FIRST-THEN visuals. 2. READING tips. 3. Using CLOSURE to assist with task completion and behaviours. 4. Some insights into SENSORY SENSITIVITIES. 5. MODELLING techniques which support learning and behaviours. 6. BACKWARD CHAINING for skill building. 7. Whole-team communication: therapists, educators and the family. The production of this webinar was supported by a grant from the Qantas Side by Side program.

AVAILABLE ON REPLAY SOON

Understanding Anxiety and Fragile X syndrome

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.

Online for REPLAY soon

The challenges for highly verbal individuals with FX and how we can best support them

This webinar addresses the specific speech, language and social skill difficulties that highly verbal individuals with Fragile X often experience. Join us to learn more about the components that contribute to successful interactions as well as the underlying difficulties that we need to be aware of. Strategies and suggestions will be discussed specific to the Fragile X learning style, followed by Q&A. LIVE ZOOM: register online to join us live. REPLAY: available here a week later. SHARE: invite everyone in your therapy team, carers, educators, family. All welcome

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.

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30 Years Strong | Supporting | Sharing | Connecting | Informing

Understanding Fragile X

Fragile X Disorders