FX Newsletter | December 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