CDLS HOPE FOR HASTI
We are committed to creating a gene therapy for CdLS
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.
Hasti is an amazing little girl. From feeding difficulties, problems with breathing, in and out of hospital, late to walk, late to speak, poor growth velocity and many more problems besides ... it has been a testing journey.
She has so much courage and perseverance and it's for her that we undertake this journey to improve the lives of those suffering with CdLS. Her energy and enthusiasm for life keep us going even on the hardest days.
watch our story
HOUSEHOLD DIVISION SPECIAL MESSAGE FOR HASTI
Early in 2020 as the Household Division planned its rehearsal dates for the Queen’s Birthday Parade (Trooping the Colour), they became aware of Hope for Hasti.
The Brigade Major invited Hasti to take the salute at his review of the parade which would have happened on May 28th, unfortunately the global pandemic took hold and plans had to change as they switched focus to supporting the government’s efforts to control the spread of COVID-19. The Household Division was really sorry Hasti could not share the day with them as planned, but have instead prepared a special video message for her which you can watch here.