Rett Syndrome Trust

HQ Location: 
Buckinghamshire

Location of benefit: 
UK only (nationwide)

Rett Syndrome is a debilitating disorder which most often strikes previously healthy little girls just after they have learned to walk and say a few words and begins to drag their development backwards. As the cascade of Rett symptoms descends, girls lose acquired skills, normal movement and speech. Then begins the long regression that may leave her in a wheelchair, unable to communicate or use her hands. Extreme anxiety, disordered breathing, Parkinson-like tremors, orthopaedic problems, and seizures are common. Many children live into adulthood requiring total 24 hour care. There is no cure.
But in 2007, the symptoms of Rett Syndrome were reversed in pre-clinical models of the disorder. This achievement has established a new paradigm for 21st century medicine and the treatment of Rett Syndrome. The focus of research is no longer confined to treatment management; it is now realistic and urgent to focus on a cure.
Launched by the families of girls living with Rett Syndrome today, RSRT UK has one intensive focus; to accelerate the delivery of treatment for their daughters.