Story
We are doing a sponsored walk for Rianna (Martin and Christabel’s daughter), who has Rett Syndrome. At the moment there is no cure for Rett Syndrome, that is why we are raising money for Rett Syndrome Research Trust. Recent advances suggest that a cure is out there. With your help Rett Syndrome could be one of the first brain disorders to have a cure.
Steve is doing the 40Km walk and Celia with the girls are all doing the 10Km version.
About Rett Syndome
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. It drags their development backwards. It’s a brain disorder that effectively stops the brain from communicating.
As the cascade of Rett symptoms descends, girls lose acquired skills, normal movement and speech. Girls are left unable to communicate or use their hands to hold, carry or manipulate objects. Over time, girls who have learned to walk often lose that ability as well. Loss of motor control sets in, essentially locking these girls into bodies that won't work, leaving them without the ability to make purposeful movements.
Most girls with Rett Syndrome survive into adulthood, becoming increasingly more disabled over time. Invariably, they need one to one, 24 hour a day care for the rest of their lives. For families living with Rett Syndrome, the prognosis has always been poor, until the reversal experiments of 2007 catapulted the disorder into new realms of possibility, positioning Rett Syndrome to become the world's first curable brain disorder.
We believe that Rett Syndrome is reversible. Everything we do every day stems from this belief.
Just Walk
Participants of this “Just Walk” event pay all the costs of taking part. This means that 100% of your donation to the charity goes straight to the vital research.