Selected resources specific to Rett syndrome
Susan Norwell (USA), a specialist on communication and Rett syndrome, conducted 2 all day forums in Brisbane in May 2016. One was for families and the other, for professionals. Copies of these presentations can be obtained directly from Equity Works via the following link
‘Our Lives with Rett syndrome’
A 35 minute video which was produced in 2014, begins with Dr Helen Leonard, Principal Researcher for the Australian Rett Syndrome Study, briefly describing the current work of her team. The remaining 30 minutes of this presentation sees parents and siblings talking openly about their lives with Rett syndrome.
The video is a professional production, its content both relevant and informative, and is a valuable resource on the syndrome, particularly for a family whose young child receives a diagnosis. It can be viewed by clicking on the following link http://vimeo.com/110741678
Respite Plus Initiative (Queensland)
The ‘Respite Plus Initiative’ has been recently been established in Queensland to assist the Rett syndrome families who live there. As the name implies, ‘Respite Plus’ is more than the provision of respite. School holiday programs, parent/carer education, peer support, workshops and mentoring, will also be included. Based at Lily Grace House in the Brisbane suburb of Boondall, ‘Respite Plus’ is a partnership between Equity works; the QLD Dept of Communities, Child Safety and Disability Services; the Centre of Excellence for Clinical Innovation and Behaviour Support; Inclusion Plus Family Support; and the Queensland Rett syndrome community. More information is available on the Equity works website at http://www.equityworks.org/support-services/respite-plus-services/respite-plus-initiative/
Furthering one’s knowledge of Rett syndrome
World Congress on Rett Syndrome – June 2012 – New Orleans, USA
In June 2012, the 7th World Congress on Rett Syndrome was held in New Orleans. Organised by the International Rett Syndrome Foundation, topics referred to in a report prepared by RSAA’s representative at the Congress, include eye gaze technology, communication, therapies, health issues, education and research. Please click on World Congress on Rett Syndrome June 2012 to view the report.
European Conference on Rett Syndrome – October 2013 – Maastricht, the Netherlands
In October 2013, the 3rd European Conference on Rett Syndrome took place in Maastricht, the theme of which was “Research Update and Preventive Management”. It was the first occasion that the RSAA had been represented at a conference organised for the European Rett syndrome community. Topics referred to in a report prepared by RSAA’s representative in Maastricht include communication, research, aging, therapies, curvature of the spine and dental care. Please click on European Rett Syndrome Conference – Oct 2013 to view that report.
Rett New Zealand’s bi-annual conference, Auckland 16-18 May 2014 – A summary
Topics include communication, education, orthopaedics and research. The report has been prepared by Phil Creswell who represented RSAA at the conference. Please click the following link to view 2014 RettNZ Conference Report