ActiveRett

Staying physically active is an important part of a healthy lifestyle. ActiveRett is a dedicated resource for helping families support their child with Rett syndrome to keep active.

Welcome to ActiveRett, an online resource to help families, carers, therapists, and teachers to support people with Rett syndrome to live more physically active lives.

There is information in this resource that will be valuable for other neurodevelopmental conditions.

ActiveRett has been developed by researchers from Australia, Denmark, and Israel, together with parents who have a child with Rett syndrome.

There is information on how to plan opportunities for uptime for people with Rett syndrome. Uptime refers to opportunities for standing and walking rather than sitting and lying.

You will also find information about how and why to get active, Rett syndrome, physical activity guidelines, useful equipment, tips for caring for caregivers, and summaries of relevant research.

You will be able to read some quotes from parents to understand their experiences.

We suggest that you talk with other family members and your health care professionals who may be helping with your child’s care about the information in ActiveRett.

Uptime

Planning for more uptime

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Uptime

Uptime routines

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Uptime

Strategies toolkit

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ActiveRett was developed as part of a grant awarded to Telethon Kids Institute by the International Rett Syndrome Foundation to increase physical activity in Rett syndrome.

You can get in contact with the Rett team by emailing Jenny at Jenny.Downs@telethonkids.org.au

We would like to acknowledge the contributions of Anisha Chowdhury and Christopher Dougherty in the creation of the ActiveRett material.

The co-design team

ActiveRett could not have been made possible if it weren't for the insights, trust, and collaboration with our co-design team. We'd like to acknowledge and deeply thank them for their contributions and ongoing support, with special mention to Geoff, Mark, Mandy, Kerrie, Jane, and Claude.