Our 2025 Webinar/Q&A series commences with a discussion by Dr Jonathan Cohen MD on Medications and Fragile X syndrome on 20th February 2025, 8pm AEDT. We're delighted to co-host this event with Fragile X New Zealand, and we also thank the Qantas Side by Side Program grant for supporting the production of the webinar.
Events
Prepare for an adrenaline-fuelled spectacle as Sydney Harbour prepares to host many of the country’s finest paddlers for the 24th annual Manly Wharf Bridge to Beach on Sunday, February 23rd. This iconic 11km race, one of the biggest on Australia’s paddling calendar, promises thrills and spills while supporting our fundraising for our FX Family Support Counsellor role. The race is sponsored by Manly Wharf and Shaw and Partners Financial Services. Are you a paddler? Race registration is open until 21 February. Not a paddler? Come down to Manly Wharf and watch all the action as the paddlers cross the finish line.
News
We wish everyone joy and happiness for the holiday season! The FXAA team is taking a break and will be back on deck on Tuesday 28th January 2025. We're looking forward to another great year ahead in 2025 - with a new webinar series, continuing to improve understanding of Fragile X-associated conditions through participation in medical conferences and Disability Expos, catching up with our members, and providing information and support where we can.
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Our latest news! 2024 Lookback - Meet the FXAA Achievement and Volunteer of the Year Award recipients for 2024, and catch up on photo highlights from 2024. Read a tribute to Prof Gillian Turner AO, whose work in understanding the genetics of Fragile X made a difference for so many Australian families. You'll find an update on our Adults & Ageing research study, and a link to the recording of the FX Premutation Update webinar we ran in November. Looking to 2025: You'll find dates for new webinars in our series, and links to some handy Back to School resources for parents & educators. Check out the dates for Disability Expos FXAA will participate in throughout 2025. Meet our Board members, and read about what might be on the horizon for advances in treatments for Fragile X syndrome in the future.
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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 Reports
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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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.
