We’re looking forward to presenting new webinars! * MICROBOARDS – an introduction to the role of Microboards as a means to support planning for the future for a child or adult with Fragile X syndrome. (3 September) * ASK ME ANYTHING ABOUT FRAGILE X SYNDROME, with Dr Marcia Braden PhD and Dr Jonathan Cohen MD. (8 September)
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Our Future Planning series continues with a 2-part series on the role of Circles of Support in creating current and future networks of support for a family member with disability. Two live-only sessions will be presented by Catherine Hogan, a disability advocate with lived experience in establishing Circles of Support for her own family members. And we're looking forward to an OPEN MIC session with Dr Marcia Braden PhD and Dr Jonathan Cohen MD together - an äsk me anything" session on Fragile X.
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On 22 July each year we celebrate World Fragile X Day! In 2024, significant landmarks in each state and territory will shine an orange light for Fragile X. With an incredible 120 landmarks participating this year, there may well be something lighting up near you!
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Fragile X Care | Adults & Ageing is the first Australian study on the support needs, health & wellbeing of adults with Fragile X syndrome as they age. We invite family members/carers and people supporting adults with Fragile X syndrome to participate. Available to complete ONLINE, in PAPER FORM, or BY PHONE with our Family Support Counsellor.
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Fragile X Care | Adults & Ageing is the first Australian study on the support needs, health & wellbeing of adults with Fragile X syndrome as they age. We invite family members/carers and people supporting adults with Fragile X syndrome to participate. Available to complete ONLINE, or in PAPER FORM.
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Catch up on our latest news: our Fragile X Care | Adults and Ageing research study with surveys open now - exploring support needs, health & wellbeing and future planning for adults with Fragile X syndrome. FX webinars in June & beyond, with a focus on future planning for a family member with Fragile X syndrome. Meet Montana Whiteley, a talented athlete! Research news - building knowledge of the Fragile X premutation, and genetic testing.
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A message from President of the Fragile X Association of Australia (FXAA), and mother of 29-year-old Daniel who lives with Fragile X syndrome. We’re just a few weeks out from the End of Financial Year and as June 30 approaches, I invite you to consider making a donation to FXAA help us ensure people living with Fragile X are connected, included, understood and empowered.
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Our FX Webinar program in 2024 features new additions to the program. On 25 May Dr Marcia Braden PhD will present on Fragile X syndrome and autism spectrum disorder and in June Margaret Duncan, Principal Lawyer from Duncan Legal will discuss disability estate planning and special disability trusts.
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This webinar/Q&A on Tuesday 23 April 8pm AEST will be a good introduction to Future Planning considerations or parents / caregivers of a child or adult with Fragile X syndrome. Presented by South Australian Council on Intellectual Disability this presentation will outline • Circles of Support and Microboards • Carer wellbeing and advocacy; • Supported Decision Making; • Wills and guardianship
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Watch the action! On Sunday 18th February as close to 400 paddlers took on the 23rd annual Bridge to Beach paddle race across Sydney Harbour. This iconic race is one of the biggest on Australia’s paddling calendar, and delivers thrills and spills while supporting Fragile X Association of Australia in raising much-needed funds for our Family Support service.
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Children aged 3 to 22 years who are experiencing Fragile X syndrome-associated behavioural issues may be eligible to participate in a clinical trial in Australia. The RECONNECT study is seeking to evaluate the efficacy of a topical gel developed by Zynerba Pharmaceuticals in helping with the Fragile X-associated behaviours. The study remains open to participants through to the end of 2024.
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Your generous donation will help FXAA ensure people living with Fragile X are connected, included, understood and empowered. Specifically, your donation will help us maintain and deliver support and connections to the Fragile X community around Australia: 1. Counselling support 2. FXAA Helpline - available 5 days per week - 1300 394 636 3. Webinar program 4. Peer connection and referrals 5. Advocacy work – for example, our Fragile X Care | Adults & Ageing research study. This is the first Australian study on the support needs, health & wellbeing of adults with Fragile X syndrome as they age. All support is sincerely appreciated and helps us make a difference for the Fragile X community.
