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Rett Syndrome Association of Australia

Rett Syndrome is a rare, genetic neurological disorder that affects females and males which leads to severe impairments in the way the brain matures. While early development may appear typical, this changes as children begin to experience challenges such as loss of motor skills, communication ability, seizures, breathing irregularities, and a wide range of physical symptoms.

The degree of impact varies significantly, but what remains constant is the strength and courage of those living with Rett Syndrome and their families. Allora is proud to raise awareness and promote the incredible work of the Rett Syndrome Association of Australia wherever we go. To learn more or to support, visit: www.rettaustralia.org.au

This time of their lives can be marked by most, if not all of, the following:

  • non-purposeful repetitive hand movement

  • reduced eye contact

  • night laughter

  • screaming

  • problems with walking

  • loss of communication ability

  • seizures

  • breathing problems (breath holding, fast breathing, and/or air swallowing)

  • electroencephalogram (EEG) irregularities

  • slowing of head growth

  • varying degree of intellectual disability.

As the child grows, most, if not all of, the following, may become apparent:

  • muscle stiffness
  • cold bluish-red feet and legs and/or small feet
  • chewing/swallowing difficulties
  • abnormal sleep patterns
  • teeth grinding
  • constipation
  • spinal curvature
  • growth retardation
  • decreased body fat and muscle mass
  • tip-toe walking
  • decreased mobility.
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Apraxia (dyspraxia) i.e., where the brain has difficulty putting in place the automatic planning needed to carry out voluntary movement, is the most fundamental and severely handicapping aspect of RTT.

The degree of disability varies considerably among affected individuals, so much so that two individuals of the same age can present two totally different pictures of the disorder. The syndrome is not one involving continual degeneration of the brain. However, over time, gross motor ability is likely to deteriorate. Generally, the condition is not one in which there is a continuous downward trend but one where times of improvement alternate with periods of impairment and deterioration.

The disorder was first brought to the attention of the medical profession in 1966 by an Austrian doctor, Andreas Rett, but it wasn’t until 1983, following publication of an article by Swedish researcher Bengt Hagberg and others, that females in Australia and elsewhere began to be diagnosed.
info@rettaustralia.org.au

Our Mission

  • To support families and caregivers by providing resources, information, and connections to services.

  • To advocate for individuals living with Rett Syndrome, raising awareness and championing inclusivity.

  • To fund and promote scientific research aimed at understanding the causes and finding treatments—and ultimately, a cure.

  • To build community, helping families feel seen, heard, and supported every step of the way

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