Benjamin Leo

Hope for Hasti

Fundraising for Hope for Hasti
£463
raised of £1,000 target
Donations cannot currently be made to this page
700 mile relay, 19 September 2020
Hope for Hasti
Campaign by Hope for Hasti (RCN 1188769)
I'm Chris Brannigan and Hasti is my daughter; she has a rare genetic disease (CdLS). I'm embarking on a 1200 mile journey from Bar Harbor, to Jacksonvill carrying 55lb and walking BAREFOOT to raise funds for a gene therapy for Hasti's condition.

Story


Inspired by the amazing efforts of Chris and Hengameh, the proud parents of 8 year old Hasti, we're 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.
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.
We're doing a 12 mile leg from Kirkharle to Otterburn as part of a 700 mile relay to recreate the amazing journey Chris underwent totally barefooted. Please help me reach my target of £100 so that we can help give amazing children just like Hasti a more independent and better quality of life in the future. Much love x

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.

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About the campaign

I'm Chris Brannigan and Hasti is my daughter; she has a rare genetic disease (CdLS). I'm embarking on a 1200 mile journey from Bar Harbor, to Jacksonvill carrying 55lb and walking BAREFOOT to raise funds for a gene therapy for Hasti's condition.

About the charity

Hope for Hasti

Verified by JustGiving

RCN 1188769
Hope for Hasti is a charity focused on the development of a gene therapy for Cornelia de Lange Syndrome (CdLS), to improve the quality of life of those living with this rare and little known genetic condition. But those that live with CdLS deserve hope, and we aim to give it to them.

Donation summary

Total raised
£462.73
+ £73.75 Gift Aid
Online donations
£462.73
Offline donations
£0.00

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