Inspired by the amazing efforts of Chris and Hengameh, the proud parents of 8 year old Hasti, I am taking part in a 700 mile relay to raise money to fund vital research to develop gene therapy and conduct clinical trials for children like Hasti with CdLS.  Me and members of my team have decided to take part in the relay which recreates the 700mile treck which was previously carried out by Chris who was completely barefooted throughout the whole journey.  Our leg of the relay will involve all 6 of us walking and running 12 miles from Kirkharle to Otterburn completely barefoot.  Our aim is to raise £100 each to build hope and do our bit for children like Hasti.

Please help us reach our goal in bringing a brighter future to children with CdLS.

Chris and Hengameh's story:

My name is Chris Brannigan and Hasti is my daughter, she is 8 years old and dreams of being a chef and a dancer.Hasti however has a rare genetic disease, Cornelia de Lange Syndrome (CdLS). CdLS is characterised by reduced growth, global developmental delay, feeding problems, speech and language difficulties hearing problems and, in many cases, limb abnormalities, but it is rare for children with CdLS to become adults who live independent lives, often needing round the clock care for their entire lives. No cure or treatments exist for this terrible disease which occurs in just one in every 30,000 live births, but we are committed to change that so that all children with CdLS, both now and in the future, can enjoy better lives. But to do that, we need your help. We just need £400,000 to pay for the research to create a treatment for this disease.