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Rett Syndrome

Rett Syndrome


Contact: Bill Callaghan (RSAA Vice-President)
Tel: 0418 561 796
Email: rettaust@bigpond.com
Website Click here
More info: Description of services or purpose of the organisation
Mission: To enhance the quality of life for individuals with Rett syndrome and their families.

Objectives:
To collect, catalogue and share accurate and objective information about the syndrome
To promote the general welfare of individuals with Rett syndrome
To support families in coping with the condition
To develop understanding and awareness of Rett syndrome
To further the advancement of study, research, therapy and care.

Activities/Services
Assist with the organisation of, and participation by families in, drug trials conducted in Australia
Referral point for parents, siblings, carers and others, seeking assistance
Cataloguing of information relevant to Rett syndrome or a related disorder
Facilitate the staging of conferences/workshops including the 2021 World Rett Syndrome Congress
Organise informal get-togethers of families across Australia
Assist with the establishment of clinics specifically for Rett syndrome patients
Liaise with sister associations located outside Australia
Promote community awareness of the disorder
Assist with fundraising activities.
About: Classical Rett syndrome is a rare neurodevelopmental condition that mainly occurs in females. Children with the condition usually have normal development until about 6 to 18 months of age, when development may be stagnant for a period of time. Children may then begin to lose previously acquired skills, such as purposeful hand movements and the ability to communicate.
Additional features may include slowing of head growth, development of distinctive, uncontrolled hand movements, such as hand clapping, rubbing, or ‘wringing’, impaired control of voluntary movements required for coordination of walking, autistic-like behaviours, breathing irregularities, feeding and swallowing difficulties, growth impairment, and seizures. Rett syndrome is caused by a faulty gene on the X-chromosome that may, in rare cases, be inherited in an X-linked dominant pattern. In
most cases, however, Rett syndrome occurs spontaneously (sporadically) for unknown reasons, as a new gene change in an affected individual.
Useful links:

Facebook RSAA's public site - https://www.facebook.com/rettaustralia

Rett Syndrome Australia closed site, approval required to become a member - https://www.facebook.com/groups/15688775612/

International Rett Syndrome Foundation (also known as rettsyndrome.org): https://www.rettsyndrome.org/

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