Victoria Carroll

Tideway Odyssey & Hope for Hasti

Fundraising for Hope for Hasti
£11,093
raised of £15,000 target
Donations cannot currently be made to this page
Talisker Whisky Atlantic Challenge 2021, 12 December 2021
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

Hasti 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 they 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. They 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
£11,092.44
+ £2,105.00 Gift Aid
Online donations
£11,092.44
Offline donations
£0.00

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