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Hope for Hasti

2132. Hengameh Delfaninejad
2131. Chris Brannigan

Major Chris Brannigan and Hengameh Delfaninejad, from Woking, founded 'Hope for Hasti' to raise funds for their daughter Hasti's rare genetic disorder, Cornelia de Lange Syndrome (CdLS).

Chris Brannigan, Henjameh Delfaninejad and family

The typical effects of CdLS can include reduced growth, problems with feeding, speech and language difficulties, hearing problems, cognitive disability and limb abnormalities as well as experiencing depression and anxiety. Children with CdLS often go on to need continuous care in adulthood. 

Following Hasti’s diagnosis, Chris and Hengameh decided to set up the charity in January 2020 to help fund research and development of a gene therapy for CdLS. Chris has since undertaken multiple challenges to raise money for the charity, including walking barefoot over 700 miles and carrying a 25kg weight from Land’s End to Edinburgh in 2020, and then walking 1,000 miles barefoot again from Maine to North Carolina in 2021. In total, they have now raised over £1.2 million, and as of 2023, the charity is now able to fund two gene therapy trials and a drug repurposing trial for CdLS, working with The Jackson Laboratory based in Maine.

Jonathan Lord, MP for Woking, said: 

‘’Hope for Hasti’ is an inspirational charity and Major Chris Brannigan and Hengameh Delfaninejad are to be congratulated on their amazing achievements and this well-deserved Points of Light award.”

Chris said:

“I’m really grateful to receive this award and to accept it on behalf of ‘Hope for Hasti’. In truth, it has never been a solo effort. I could never have raised a penny without the support of my wife, Hengameh Delfaninejad, or the hundreds of volunteers, especially within the Armed Forces community who have carried me forward. We’re closer than ever to creating a therapy for Hasti’s condition and I hope this award will help other rare disease families realise that there is real hope for novel treatments to improve and extend the lives of their children … if we just reach for them.”

Hengameh said:

“I’m honoured to receive this award from the Prime Minister. Balancing being a mother and a professional is difficult, but balancing work, being a mother to a child with a rare condition, and trying to fundraise and create a novel medical intervention, is harder than I could ever have imagined. I hope this award will help raise awareness about rare conditions and the lengths families will go to, to fight for their children to have the health and future they deserve.”

Pictured below: Chris with Hasti following his barefoot challenge across Britain (Photo credit: Anthony Upton, 2020)

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The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

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