Our Annual Report 2023-2024 is a terrific wrapup of our programs and activities over the past financial year. Providing support through counselling, peer support and connection, educational webinars, our FX Adults & Ageing study, raising awareness of Fragile X associated conditions, getting involved in Disability Expos and medical professional education forums, our fundraising fun. And more...
Annual Report
Join us for an update on the Fragile X (FMR1 gene) Premutation, presented by Dr Jonathan Cohen MD. The presentation will address the symptoms and conditions which some carriers of the Fragile X Premutation can experience, and outline current approaches to management of symptoms. The presentation will be followed by Q&A. While the presentation will be recorded and made available on our youtube channel later, the Q&A will be live only. Many thanks to the Qantas Foundation Side by Side educational grant which is supporting the production of this webinar.
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The AGM is always a great chance to reflect on the past year and look to what's ahead. We'll cover FXAA's programs and impact in 2024, review the organisation's financials at 30 June 2024, and elect new Board members. We’ll celebrate FX Achievement and Volunteer Awards, provide an update on our Fragile X Care| Adults & Ageing work, and take a look at what's on the horizon for FXAA in 2025. In addition, members will be asked to vote on a Resolution to amend the FXAA Constitution 2023. We hope to see you online for the AGM, Sunday 1 December 3-4:15pm AEDT
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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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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.
