FX Webinars on Future Planning and other topics

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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22 July | Australia lights up for World Fragile X Day

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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Open to 15 August – Survey for Families of Adults with Fragile X syndrome | Invitation to participate

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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Open to 15 August – Survey for Service Providers supporting Adults with Fragile X syndrome | invitation to participate

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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FX Newsletter | June 2024

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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End of Financial Year donations

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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Webinars coming up in May and June

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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Webinar/Q&A Future Planning considerations, 23 April 2024

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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New children’s book – Chloe and Tom, a story about siblings and Fragile X syndrome

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Manly Wharf Bridge to Beach race supporting Fragile X – all the action!

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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RECONNECT Fragile X syndrome clinical trial open throughout 2024

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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FX Webinar Program 2024

Our FX Webinar series 2024 commences shortly and sees the return of several regular presenters, including Kate Strohm and Dr Marcia Braden PhD. Over the coming weeks Kate Strohm will present two webinars on supporting siblings of children or adults with Fragile X syndrome. In April and May Dr Marcia Braden PhD will discuss the specific challenges Fragile X syndrome can present for females, and present a new discussion on differentiating Fragile X syndrome and autism spectrum disorder.

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