Adults & Ageing with Fragile X syndrome: Australian study

July 13th, 2023

Dr Mary-Ann O’Donovan PhD, Executive Director of the Centre for Disability Studies (research affiliate of University of Sydney), presented at the FX Research Roundup webinar, 13 July 2023.

Profiling a joint study to be undertaken by Fragile X Association of Australia and Centre for Disability Studies in 2024-2026.
This will be the first Australian study of adults living with Fragile X syndrome. From early 2024, this study will:

o  Explore the need for and effectiveness of supports for the ADULTS, particularly those in residential care / group home settings
o  Explore the need for and effective supports for CARERS of the adults living at home, eg supports for future care planning and transition in later life
o  Produce best practice information resources and care strategies for the disability and aged care workforce
o  Generate recommendations and advocate for health policy and practice improvements.

Watch the video recording of the presentation on our youtube channel:  https://youtu.be/JLq5Aqk7NMo

 

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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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