Christmas & Season’s Greetings Cards – new for 2023
For 2023: printed Christmas cards in 3 designs, and a "Season's Greeting" design. A lovely personal way to wish friends and family all the best at this time of year.
News
Medicare funded – Reproductive Genetic Carrier Testing for Fragile X syndrome, Cystic Fibrosis and Spinal Muscular Atrophy
1 in 20 people carry a gene change for Cystic Fibrosis (CF), Fragile X syndrome (FXS), or Spinal Muscular Atrophy (SMA), and most are unaware that they are carriers. arrier screening is a genetic test that can tell people if they have an increased chance of having children with an inherited genetic condition. From 1st November 2023, there will be a new Medicare item number that will cover reproductive genetic carrier testing for Cystic Fibrosis, Fragile X syndrome and Spinal Muscular Atrophy for people planning a pregnancy or in early pregnancy.
News
Annual General Meeting 2023,19 November 3-4pm AEDT
Join us! As we celebrate Awards for achievements by members of the FX community, thank the volunteers who are behind our successes, review our programs over the past year, vote on nominations to the Board, and take a look at what's on the horizon for 2024. Online via Zoom.
News
Medications and Fragile X syndrome
With Dr Jonathan Cohen MD, from a webinar recording August 2023. Discussion of conditions associated with Fragile X syndrome (such as anxiety, ADHD, aggression and self-injury, OCD, mood disorders, epilepsy and sleep disorders) and the types of medications which may be recommended for the treatment of those conditions.
Fragile X Podcasts
22 July : Australia Lights up for World Fragile X Day!
World Fragile X Day is 22 July, and celebrated in many countries around the world including Australia. Since 2016 Fragile X Association of Australia has invited significant landmarks across Australia to illuminate “ORANGE” on this day, orange being the signature colour for Fragile X in Australia. 2023 was set to be a standout!
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Adults & Ageing with Fragile X syndrome: Australian study
With Dr Mary-Ann O'Donovan, from the FX Research Roundup webinar 13 July 2023. Profiling the first Australian study of adults and ageing in Fragile X syndrome, a collaboration between Fragile X Association of Australia and Centre for Disability Studies in 2024-2026.
Fragile X Podcasts
Cannabidiol and Fragile X syndrome
Dr Helen (Honey) Heussler, developmental and behavioural paediatrician. Outline of the working of the human endocannabinoid system, the impact of Fragile X syndrome on that system, and how cannabidiol (non-THC CBD) can provide regulation and control. Discussion of the function and findings of clinical trial phases which preceded the current RECONNECT study in Australia.
Fragile X Podcasts
Research Study: Early Sleep Interventions to Improve Outcomes in Children with Neurodisability
News
Sleep Disorders and Fragile X syndrome
Dr Helen (Honey) Heussler, developmental and behavioural paediatrician and sleep specialist, from webinar recording May 2023. Unpacking what lies behind the problems many children with Fragile X have in initiating and maintaining sleep. Practical strategies for environmental and behavioural modifications to help children achieve good sleep.
Fragile X Podcasts
Clinical trial in Fragile X syndrome – 4 Australian sites
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Report: Exploring experiences with online peer support programs for the Fragile X community
News
Supporting Learning Across the Lifespan in Fragile X (part 2)
With Dr Marcia Braden PhD, psychologist. From a recording of part 2 of a 2-part webinar, March 2023. Here Dr Braden showcases strategies which utilise learning strengths and are applicable for a classroom, and in community and job settings, with examples of successful school supports and work placements that match learning style to tasks.
Fragile X Podcasts
