CDLS is a rare genetic condition that presents children with a wide range of difficult physical and behavioural challenges.Hope for Hasti is funding cutting-edge research to develop a gene therapy for this rare condition which will dramatically improve their quality of life.Working closely with some of the brightest minds in genetics, we can change the lives of the children affected by this illness. To achieve our goal, we need your help.

“Between 15th June and 12th August we will be running / walking / cycling / swimming as far as we can for a charity called CdLS Hope for Hasti. This charity is run by a mum and a dad who are trying desperately to develop a gene therapy for a rare disease called Cornelia de Lange Syndrome (CdLS) which their little 8-year-old girl Hasti suffers from.

As part of a wider community effort we will be attempting to traverse 4,855 miles, the distance from the UK to Cyprus and back, which represents an important part of this family’s journey. The therapy they are developing for children with CdLS only costs £400,000. We are determined to help them achieve their goal of defeating this disease, we hope you will help by sponsoring us”.