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  Wendy Mum of two kids, Joshua and Julia. ORIGINS project member and trial participant.          I discovered that my son was allergic to nuts.

  Evelyn Age 18. Youth advocate, volunteer.             Research is what leads to change. It presents countless possibilities for discoveries -

  Amber Mum of four, Ethany, Xavier, Imogen and Adison. Co-founder of Tiny Sparks WA, Chair of Preterm Community Reference Group, Wal-yan Respiratory

We developed recommendations to assess and manage issues relating to poor growth and weight gain in Rett syndrome, including consideration of gastrostomy.

We investigated our data from family questionnaires to see how feeding difficulties related to age, the type of MECP2 mutation, and the use of gastrostomy.

We developed a measure of hand function, and then investigated relationships between hand function, type of MECP2 mutation, age and severity of symptoms.

We investigated what parents thought about the ways to manage scoliosis and what they thought they needed to help them better manage their daughter's scoliosis.

When you build routines into your day to increase uptime, it doesn’t only affect the person with Rett syndrome; it affects the whole family.

AussieRett is the Australian Rett syndrome research study. We collect information on Australian individuals with Rett syndrome from both families and clinicians

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Helen and Jenny visited Shenzhen in the south of China twice during 2013 to talk with clinicians and families at the Shenzhen Children's Hospital.