FX Newsletter | December 2023

December 16th, 2023

Wrapping up 2023 and a look at what’s on our horizon for 2024!

  • Congratulations to the winners of the FXAA Achievement Awards and Volunteer Awards for 2023, announced at our Annual General Meeting in November.
  • Fragile X Care | Adults and Ageing – the first Australian research study on adults with Fragile X syndrome will swing into gear in early 2024.   A collaboration between Fragile X Association of Australia and Centre for Disability Studies (research affiliate of University of Sydney)
  • FX Webinar series – links to recordings from 2023, and a look at what’s planned for 2024
  • The RECONNECT clinical trial in Fragile X syndrome has been extended to March 2024, and is taking place in Adelaide, Brisbane, Melbourne and Sydney. (children aged 3-22 years)
  • Headsup about Disability Expos around the country in 2024
  • Results of a small research study on support needs for fathers of children with Fragile X syndrome
  • Online learning modules
    • Understanding Anxiety and Sensory Sensitivities in Fragile X syndrome – created by Fragile X New Zealand for parents, carers and health professionals
    • Intellectual Disability and Mental Health – by UNSW, for Parents/Carers
  • Reproductive carrier testing for Fragile X, cystic fibrosis and spinal muscular atrophy is subsidised through Medicare from 1 November 2023
  • Fragile X premutation
    • a wrapup of some of the topics discussed at the FX premutation conference in NZ earlier this year
    • a call out for participants to join the International Fragile X Premutation Registry
    • news of the extension of a small research study in Melbourne looking to assess the different impacts for female and male carriers of the Fragile X premutation

And more…..

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Survey for parents / carers of adults with Fragile X syndrome

FRAGILE X | ADULTS & AGEING. We're undertaking the first Australian study on the support needs, health & wellbeing of ADULTS with Fragile X syndrome. Our goal is to enhance quality of life for adults with Fragile X syndrome as they age. We invite parents or carers to participate in our SURVEY. The survey has questions about: 1. GENERAL HEALTH AND WELLBEING of the adult with Fragile X syndrome. 2. EFFECTIVENESS OF EXISTING SUPPORTS for the adult with Fragile X syndrome as they age. 3. FUTURE PLANNING concerns of families & carers who provide support 4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care. From the information contributed through the Survey we will develop training modules for frontline carers and tools for advocacy. The Survey can be completed ONLINE, in PAPER FORM, or by PHONE. Contact us for more information - support@fragilex.org.au or 1300 394 636

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