Join our team! Serving as a volunteer director on the Board of FXAA is a rewarding way to support the Fragile X community and to help shape the future direction and impact of our organisation. At our Annual General Meeting on 1 December three vacant Board positions are open to be filled. If you're a current member of FXAA, keen to make a difference meet the eligibility criteria, complete a Nomination Form by 31 October, close of business.
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We invite you to join us online on Sunday 1 December for a review of our programs and work over the past year, to celebrate Achievement Award winners, make a special tribute in memory of Professor Gillian Turner AO, to elect new Board members and take a look at what's on the horizon in the Fragile X field.
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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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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.
