Project Title

Fragile X Care – Adults and Ageing Project

Funding

Roth Family Foundation Grant

Project Summary

CDS is working with the Fragile X Association of Australia to identify gaps in support needs for adults ageing with Fragile X syndrome. The first stage of the project includes an online survey for both family members of people with Fragile X syndrome and staff who work with people with Fragile X. The survey has been promoted by the Fragile X Association of Australia through a range of channels and is still open to participants. A series of interviews with Australian and international experts in working with people with Fragile X has been conducted and data from these is currently being analysed.

In stage 2 of the project, the outputs of the survey will be used to create online training modules and resources for aged care and disability support workers on supporting care of adults ageing with Fragile X. This will be done in collaboration with 3DN at the University of New South Wales (UNSW).

Contact Person

Mary-Ann: mary-ann.odonovan@sydney.edu.au