Rett syndrome is a complex neurological disorder. It affects mainly girls. Although present at birth, it becomes more evident during the second year. Whilst there is variability in the severity of the disorder, most people with Rett syndrome are profoundly and multiply disabled and highly dependent on others for all their needs throughout life.

We are organising a Ceilidh in June in Haddington, Scotland to raise funds for the Rett Syndrome Association UK.  The association has provided invaluable care and support to those families affected by Rett Syndrome but has also been able to assist in funding pioneering research at the University of Edinburgh led by Professor Adrian Bird. The research found that when the MECP2 gene was activated in mice, which had previously been born with it switched off, symptoms such as breathing and mobility problems ceased. Over a four week period, the mice often became indistinguishable from healthy counterparts. This research gives hope to parents of children who have the condition as potential treatment could range from altering the gene to inhibiting the action of proteins expressed as a result of the MECP2 mutation.

We hope as many of you as possible will join us at the Ceilidh but if you can't  we hope you will be able to make a contribution to this good cause and heighten awareness of this condition.