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We described the occurrence of scoliosis in Rett syndrome, how it develops and how it is influenced by the individual's age, mutation type, and walking ability.
Twenty-five families of girls who underwent a spinal fusion between 2006-2012 were interviewed to explore the course of their daughter's recovery.
Many girls and women with Rett syndrome experience seizures. We wanted to know if there were any factors that influenced the age when seizures first developed.
We have recently developed recommendations to support clinical practice for gastro-intestinal disorders including growth and scoliosis in Rett syndrome.
With rising levels of physical and mental health issues, ensuring children establish good physical activity behaviours early in life is more important than ever.
The ARSS has a Consumer Reference Group to ensure family representation and input into issues relating to the design, management and output of the study.
Research
Positive End-Expiratory Pressure Levels during Resuscitation of Preterm Infants at Birth: The POLAR TrialInvestigators: Andrew Gill External collaborators: Assoc Prof David Tingay (Murdoch Children's Research Institute) The POLAR trial is an MRFF-funded
Research
Rainbow Knowledge: Broome & KununurraRainbow Knowledge: Broome & Kununurra is a First Nations led research project that aims to explore the perspectives, social emotional wellbeing (SEWB) and mental health experiences of Aboriginal & Torres Strait Islander Lesbian, Gay, Bisexual, Transgender, Queer or Questioning, Asexual (LGBTQA+) or other sexually
News & Events
HBF Run for a Reason 2014On Sunday May 25th, the 'I love someone with Rett syndrome' team participated in the annual HBF Run for a Reason.
News & Events
"You can't stop loving them" - a grandmother's story about her granddaughter who has Rett syndromeYou can't stop loving them: the gift of a grandchild can sometimes be painful, writes Wendy Macklin.
News & Events
The Rett Syndrome Journey: Pathways to FollowOur InterRett team visited Geelong, Australia to attend the first ever Rett Syndrome Association of Australia national conference.
Research
Setonix Pharmaceuticals: Enhancing immuno-oncology with small molecule drugsSetonix Pharmaceuticals aim to develop orally available immunotherapy drugs that are optimally effective with minimal side effects, improving outcomes for cancer patients.
Parents and carers reported on the health, school, telephone counselling and online services used by young people, as well as any medication taken.
Watch videos from the Young Minds Matter team