Hope for Hasti Raffle Ticket
Join our Hope for Hasti Fundraising Raffle Prize
We have 5 prizes up for grabs: AFTERNOON TEA VOUCHERS, A BOTTLE OF VINO SPUMANTE PROSECCO, CHEESE & WINE HAMPER, SELECTION OF OUR PANTRY ITEMS AND A MIXED FRUIT AND VEG BOX
The draw is to be taken once Chris finishes his walk. Join us to help raise as much as we can for a great local cause!
Hope for Hasti is a parent led charity, directed by Chris Brannigan, Hasti's Dad, and Hengameh Delfaninejad, Hasti's mum. Hasti is just 8 years old and she dreams of being a chef and a dancer. Hasti however has a rare genetic disease, Cornelia de Lange Syndrome (CdLS). Hasti's Mum and Dad decided to start the charity in January 2020 with view to funding the research and development of a gene therapy for CdLS.
CdLS is characterised by reduced growth, global developmental delay, feeding problems, speech and language difficulties hearing problems and, in many cases, limb abnormalities. The majority of those with CdLS will experience depression and anxiety disorders that can lead to self-harming and mutism. It is rare for children with CdLS to become adults who live independent lives, often needing round the clock care for their entire lives.
So that children with this condition, both now and in the future, can enjoy healthier lives. But to do that, we need your help. We are aiming to raise £2,500,000 to fund vital research to develop a gene therapy and conduct clinical trials. The first £400,000 will pay for the initial research, the aim of which will be to provide a proof of concept for the treatment. All the additional funds will be used to manufacture the treatment and fund clinical trials for children like Hasti with CdLS.