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Louis Hall

THE BIG HOOF

Fundraising for Cystic Fibrosis Trust
£32,622
raised of £10,000 target
by 872 supporters
Donations cannot currently be made to this page
In memory of Leo van Heyningen
Cystic Fibrosis Trust

Verified by JustGiving

RCN 1079049 (England and Wales) & SC040196 (Scotland)
We fund vital research to ensure effective treatments for all.

Story

On 18th July, Irelanda and I will begin our journey from John O’Groats to Land’s End for the Cystic Fibrosis Trust: The Big Hoof. I expect the ride to take around 50 days. We want to average between 18-22 miles a day, but we will see what happens on the way...

In 2015, Leo, a family friend of mine, died from Cystic Fibrosis. He was 26. Leo was an incredible inspiration, friend and human being to everyone he met. He chose to live his 26 years full of love and hope; he never wasted a second, and remains a hero to many. I am now not so much younger than he was when he died, and during the spread of the Coronavirus, I realised how many people with underlying health issues, such as CF, would need serious help and support during, and after, the spread of the virus. 

Cystic fibrosis is a genetic condition affecting more than 10,500 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing. At the moment, the average life expectancy for someone with the disease is 37; there is no cure, but each and every day we get closer to finding something that will work. Leo spent a lot of his life in and out of Brompton hospital. He was regarded as their 'best informed patient' and had a huge role to play in trialling a drug made by Vertex Pharmaceuticals, 'Trikafta.' Fortunately, in 2015, the drug became legal, but this was the same year that he passed. Leo's unwavering optimism only waned when he had no fight left in him. Trikafta has gone on to have extraordinary results.The money we raise will go into the extremely costly production and distribution of this potentially life-saving drug, and into further research into a total cure; the Cystic Fibrosis Trust strives for everyone with CF to be able to have access to the best available treatment, no matter who you are or where you come from.

This challenge is something I am doing independently for all those who suffer from the horrors of Cystic Fibrosis, and for Leo. Nothing that anyone does can overturn the suffering that Cystic Fibrosis inflicts upon an individual and their family, but with each step that Irelanda and I take, and with every donation big and small, we will all be fighting this disease and helping to prevent further loss in the future.

With thanks to Tunnock's, Yorkshire Tea, Mackie's of Scotland, Sip Smith's of London, Adelphi Whisky, Glenfiddich Whisky and Ormiston Highlands. 

FOLLOW US ON INSTAGRAM & FACEBOOK TO SEE HOW WE GET ON! #thebighoof / @thebighoof 



About the charity

Cystic Fibrosis Trust

Verified by JustGiving

RCN 1079049 (England and Wales) & SC040196 (Scotland)
Cystic fibrosis (CF) is a life-shortening genetic condition that slowly destroys the lungs and digestive system. The Cystic Fibrosis Trust is the only UK-wide charity fighting for a life unlimited, when everyone living with CF can look forward to a long, healthy life. www.cysticfibrosis.org.uk

Donation summary

Total raised
£32,621.41
+ £5,399.38 Gift Aid
Online donations
£29,096.92
Offline donations
£3,524.49

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