ICE Advent: Children’s Hospital Challenge
6th December 2016
Children’s Hospital Challenge
1,000 miles, 18 children’s hospitals, 10 bikes, 10 days, 1 inspiration
On 31st July 2015, 10 intrepid riders set off from Bristol on the first leg of the Children’s Hospital Challenge (CHC). Over the 10 days that followed, they visited 18 children’s hospitals in 13 different cities, covering around 1,000 miles. The route took them from Bristol to Oxford, Brighton, Lewisham, London, Derby, Nottingham, Sheffield, Leeds, Newcastle, Manchester, Liverpool, Birmingham and then finally back to Cardiff, where they arrived to a crowd of applauding supporters at Heath Hospital.
Watch a video of their journey here: https://vimeo.com/138496472
The CHC was set up by Adrian Harvie, whose young daughter Emilia was diagnosed with Alexander Disease – a rare form of Leukodystrophy – in April 2014. The aim is to raise awareness and funds for research into this and other Metabolic Diseases by supporting the charity Climb (Children Living with Inherited Metabolic Diseases).
What is Alexander Disease?
Alexander disease is a rare genetic condition and is a form of Leukodystrophy. The leukodystrophies affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells.
These disorders are progressive, meaning that they tend to get worse throughout the life of the patient and sadly, the outlook is generally poor and after onset in infancy, children rarely survive past the age of five to six years.
There are only a reported 500 cases of this disease worldwide.
Beyond the challenge
Following on from the challenge in 2015, Adrian and CHC has run several other events and fundraising activities, including black tie dinners, a summer fête and a big BBQ event.
Other individuals have also raised money on CHC’s behalf, ranging from sporting activities (including the Ironman Triathlon) and even someone who gave a ‘lightning talk’ at a local event, which grew more challenging as more money was raised. In May next year, Adrian along with 12 others will take on the world’s longest assault course, which will see them tackle 200 obstacles over a 20 mile course.
Our efforts so far
We are delighted to have raised over £85,000 to date. We recently had an application from a leading Alexander Disease researcher in America – a decision on their application will be made in early January 2017 by a group of experts who are leading the appraisal of the application for the charity Climb.
Thank you to everyone so far for your donations and support.
Find out more
Here are links to various sites and social profiles:
CHC on Facebook: https://www.facebook.com/Childrenshospitalchallenge/
CHC on Twitter: https://twitter.com/chc2015
CHC’s Givey fundraising profile: https://www.givey.com/chc