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We rely on our fundraisers enormously. Not only are they out there raising money to help fund our research into children’s health, they’re raising awareness within the community about the broad scope of work we do. They are helping to create hope for children and their families. Want to get involved?

How can your organisation help improve the lives of children?

Publications from 2017 dating back to 2004 of CDKL5 researchers.

We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.

We interviewed 17 parents with a daughter with Rett syndrome to gain their perspectives on how their daughter communicates and barriers.

For this study, we examined how Rett syndrome characteristics can be affected by X-inactivation for 2 of the common types of mutation - p.R168X and p.T158M.

We set out to describe the feeding difficulties and nutrition of girls with Rett syndrome and to examine what factors may be influencing their nutrition.

Therefore, we used video data to examine changes in hand function over time. We also investigated what other factors might influence these changes.

Discover a comprehensive guide on equipment designed to empower physical activity in children with Rett Syndrome, promoting their well-being and development.

Improving the lives of children with a disability and their families sits at the core of our team.