Webinar Program 2026
Each year our webinar series presents speakers on a range of topics associated with Fragile X syndrome and the Fragile X premutation.
The program is varied, covering practical matters around supporting daily living for people living with Fragile X syndrome, planning for the future for a family member living with Fragile X syndrome, health aspects for people who are Fragile X premutation carriers and current research. The webinars are run live on Zoom.
Webinars coming up
- NDIS: What do the NDIS changes mean to you or your family member?
Wednesday 30 September, 7pm AEST.This webinar/Q&A will explain some of the key changes and how they will impact people with intellectual disability, their families and their carers.
It will be presented by Darryl Steff, the CEO of the Down Syndrome Australia Consortium, which is a group of organisations – including Fragile X Association of Australia – which represent and advocate for people with intellectual disability which has a chromosomal cause. Presentations will be followed by Q&A.
The webinar will cover:
The BIGGEST CHANGES changes coming to the NDIS National Disability Insurance Scheme WHEN they will happen Where you can go for support and more information
Register here: https://us02web.zoom.us/webinar/register/WN_JdPEL2mSRYKtA1grvam_ng#/registration - Webinar for Occupational Therapists: Sensory Regulation Strategies in Fragile X syndrome
Tuesday 17 November 8pm AEDT
Presented by occupational therapist Bev Kadish this webinar is for OTs who are working with a child or adult with Fragile X syndrome. Bev Kadish will dive into what regulation is, how hyperarousal is connected with Fragile X syndrome. Bev will offer ideas specific to Fragile X syndrome to enable regulation so that each individual can participate, engage and be the best version of themselves.Register here: https://us02web.zoom.us/meeting/register/A0Vk242jQY-vaby7mVgEzg
1. Medications and Fragile X syndrome
Dr Jonathan Cohen presented an overview of medications that can be helpful for symptoms of Fragile X syndrome.
Recording available on YOUTUBE and audio on SPOTIFY and APPLE PODCASTS.
2. Sensory Processing and Fragile X syndrome
Occupational Therapist Bev Kadish explained what sensory processing is, the eight senses behind it, and how an OT can build a sensory diet you can use at home for a child with Fragile X syndrome. The goal of a sensory diet is to help the child regulate and be calm.
Recording available on YOUTUBE and audio on SPOTIFY and APPLE PODCASTS.
3. FX Research Roundup – July 2026
- What’s on the horizon for Fragile X syndrome – Katie Clapp from FRAXA Research Foundation presented an overview of early stage research and clinical trials being supported by FRAXA Research Foundation to identify and progress curative treatments for symptoms of Fragile X syndrome. YOUTUBE
- Prof David Hessl from the UC Davis MIND Institute introduced the International Fragile X Premutation Registry, which is supporting future research studies and clinical trial readiness. YOUTUBE
- A/Prof Jessica Klusek from University of South Carolina presented findings from research at USC on how the FMR1 premutation affects women across the lifespan, outlining unanswered questions about FXTAS in women and a need to revisit the current diagnostic criteria in women. YOUTUBE
- A/Prof Erin Turbitt from UTS Sydney shared an update on the NurtureNextGen project, which is co-designing a digital tool to improve how families receive a genetic diagnosis of a condition such as Fragile X syndrome. YOUTUBE
Updated: 23 September 2026
