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30 Years Strong | Supporting | Sharing | Connecting | Informing

Watch on REPLAY now

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.

Watch on REPLAY now

Watch on REPLAY now

The challenges for less or non-verbal individuals with Fragile X syndrome

In this second webinar/Q&A on COMMUNICATING AND CONNECTING Bev Sher discussed the challenges those who have low level verbals skills or are non-verbal. Bev covered: the difference between speech and language; how Fragile X-specific presentations such as trait anxiety and hyper-arousal interfere with language development; motor speech difficulties such as dyspraxia; the importance of parent responsiveness for language stimulation; how visuals and Augmentative/Alternative Communication can aid comprehension as well as expression; optimising hearing and oral motor development; using social stories to support receptive language; and the relationship between speech and feeding difficulties.

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

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.

Watch on REPLAY now

Watch on REPLAY now

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

This webinar addressed the specific speech, language and social skill difficulties that highly verbal individuals with Fragile X often experience. Discussion of how anxiety, hyperarousal and other traits associated with Fragile X syndrome interfere with language development. Speech & language therapies that support the Fragile X learning style. The components that contribute to successful social interactions as well as the underlying difficulties an individual with Fragile X syndrome may have in social situations.

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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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