Fragile X Premutation Conference 2023 – Lived Experience Perspective Summary Paper
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FX Raffle Prize Winners – Announcement
Winning ticket numbers in the FX Raffle which was drawn at the office of Fragile X Association of Australia, Suite 204 20 Dale Street BROOKVALE NSW 2100 on Saturday 9 December at 11am.
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Toileting Strategies and Supports Across the Lifespan, Part B
With Dr Jennifer Epstein PsyD., from webinar recording December 2023. Communication, sensory, motor, physiology & cognitive delays are commonly associated with Fragile X syndrome. These delays can pose challenges for building toileting skills in childhood and retaining those skills throughout life. This session focuses on successful toileting skills development for children over the age of 10 and adults.
Fragile X Podcasts
Toileting Strategies Webinar, 2 December – focussing on older children and adults
This 2-part webinar with psychologist Dr Jennifer Epstein addresses challenges that many children and some adults with Fragile X syndrome can experience with toileting – as a developmental issue, an ongoing concern, or as a regression from time to time. On Saturday 2 December the focus is on older children and adults.
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Toileting & Fragile X webinar – Strategies and Tips
Webinar recording | Toileting Tips & Strategies Part A (children to age 10) with Dr Jennifer Epstein
Psychologist Dr Jennifer Epstein presented research findings and key background information on toileting skill development in children to the age of 10 who have Fragile X syndrome. Dr Epstein addressed practical strategies which parents and carers can use to monitor and to assist progress with toileting skills.
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Webinar recording | Understanding Anxiety & Behaviours in Fragile X syndrome
Webinar recording from 11 November 2023 - Dr Marcia Braden PhD licensed psychologist speaking on Anxiety and Behaviours in Fragile X syndrome. Addressing what lies behind the anxiety experienced by many children with Fragile X syndrome, how the anxiety impacts daily living, learning and behaviours, and practical strategies that can be put in place to best support the person with Fragile X syndrome.
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FXAA Annual Report 2023
Our Annual Report is a comprehensive roundup of our programs and activities this past year and pays tribute to the late Professor Gillian Turner AO, whose groundbreaking work played a key role in the discovery of the genetic basis of Fragile X syndrome. It covers our work in supporting the Fragile X community through counselling, peer connections and advocacy. Our FX webinar program. Increasing understanding of Fragile X syndrome and Fragile X Premutation Associated Conditions. World Fragile X Day. Fundraising. Our Supporters. And more!
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Toileting Strategies and Supports Across the Lifespan, Part A
With Dr Jennifer Epstein PsyD., from webinar recording November 2023. Communication, sensory, motor, physiology & cognitive delays are commonly associated with Fragile X syndrome. These delays can pose challenges for building toileting skills in childhood and retaining those skills throughout life. This session focuses on successful toileting skills development for children to the age of 10.
Fragile X Podcasts
Understanding Anxiety & Behaviours in Fragile X syndrome
With Dr Marcia Braden PhD, psychologist, from a webinar recording from November 2023. Discussion of the significant impact Fragile X-associated anxiety has on daily living and on behaviours for children & adults with Fragile X syndrome. Practical tips and strategies for helping an individual to manage that anxiety and achieve successful outcomes.
Fragile X Podcasts
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.
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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.
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