“We’re 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 10 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, cognitive disability, 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.
CdLS Hope for Hasti is working in Partnership with the world-renowned Jackson Laboratory in the United States on the development of a cutting-edge gene therapy for CdLS so those living with CdLS, both now and in the future, can enjoy healthier lives.
But this is just the beginning; we plan on pioneering a number of treatments for CdLS. Watch this space!
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A special message for Hasti, from Taylor
On 1st November 2020 Chris was caught by surprise at work by Strictly Come Dancing Winner, Ore Odouba who presented with a prestigious Pride of Britain Award. This incredible honour was bestowed on him following his 700 mile barefoot march across Britain which saw him raise over £600,000 for Hope for Hasti and champion the cause of those suffering with rare disease across the world.
The Surprises weren’t finished there, as on the night of broadcast, Chris and Hasti received a personal message from international pop sensation, Taylor Swift.
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.
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