Fragile X Association of Australia | News

News

All (101) Annual Reports (2) Events (3) Fragile X Podcasts (28) News (71) Webinar Recordings (2)

Annual General Meeting 2025 | Sunday 23 November 3pm AEDT online

October 27th, 2025

Dr Cynthia Roberts PhD, President of Fragile X Association of Australia, and the Board invite you to join us for the Annual General Meeting 2025, Sunday 23rd November 3:00-4:15pm (online). The AGM is always an important opportunity to reflect and report to our members on the past year and look to what’s ahead. This year we'll cover: FXAA’s programs and impact in 2025 - supporting our members, educational webinars, HelpLine, raising awareness of Fragile X and advocating for improvements in testing and diagnosis for Fragile X. Treasurer's Report. Celebration of the Fragile X community, including ACHIEVEMENT AWARDS and thanking our VOLUNTEERS for the wonderful work they do. Election of members to the Board, with voting by online poll. And we'll take a look at what’s on the horizon for FXAA in 2025.

Events

Board nominations open to 19 October 2025

September 29th, 2025

Serving on the Board of FXAA as a volunteer director is a rewarding way to support the Fragile X community and to help shape the future direction and impact of Fragile X Association of Australia. Nominations are now open for Board members to be appointed at the Annual General Meeting on Sunday 23 November. If you're keen to make a difference for the Fragile X community, submit a Nomination form and Expression of Interest by end of day Sunday 19 October.

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22 July 2025 | Lighting up for World Fragile X Day

July 20th, 2025

Thanks to strong support from Councils, infrastructure operators, NGOs and businesses around the country - we have an incredible 124 landmarks involved in our lightup for World Fragile X Day! Brisbane City Council has promised an early kickoff on the night of Monday 21st - with Story Bridge, Victoria Bridge and other key city landmarks leading us into World Fragile X Day. What's lighting up near you?? Check out our list of supporters.

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New FX webinar recordings available

April 24th, 2025

Catchup on our most recent webinars: * FXPOI | What Do I Need to Know? * Medications and Fragile X syndrome * Fragile X FMR1 Premutation Update

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FX Webinars in April & May

April 22nd, 2025

Terrific webinars coming up on topics associated with Fragile X syndrome, the Fragile X premutation and planning for the future for a family member with Fragile X syndrome.

Events

Webinar/Q&A | Medications & Fragile X syndrome, 20 February 2025

February 9th, 2025

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

Manly Wharf Bridge to Beach race supports Fragile X

February 3rd, 2025

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

FXAA Office re-opens Tuesday 28 January 2025

December 22nd, 2024

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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FX Newsletter December 2024

December 16th, 2024

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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Annual Report 2023-2024

December 2nd, 2024

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

Webinar | Fragile X (FMR1 Gene) Premutation Update

November 13th, 2024

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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AGM 2024 | Sunday 1 December 3pm AEDT, online

November 6th, 2024

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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Support Fragile X Association of Australia

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.