Another chapter from the Reluctant Advocate
From its beginning aHUSUK had not been a fundraiser. We had always told people who wanted to raise funds to donate them to Kidney Research UK or the Foundation for Children with atypical HUS to help more research.
After a Rare Renal meeting with other renal patient organisations a year or so earlier, the Trustees had resolved that ,when time permitted, aHUSUK would organise its own fundraising project .
So it was that at the first Annual General Meeting following the NICE guideline for aHUS and eculizumab being published, a fundraising effort began.
With the project title Journey for Life , its concept was that aHUSUK members would walk, run cycle whatever , from a one point in the UK to another in an actual or virtual relay. The search was on for two places called Illand to Welland to provide starting an end points for the journey
An Illand was found in the most South westerly county in the UK, Cornwall. There was a Welland in London near Greenwich but the plan changed so that the journey would end at the Centre for Life in Newcastle upon Tyne., in the north easterly corner of England.
As it was a relay ,a baton was provided ( a plastic test tube- symbolic of research).
The special guest attending aHUSUK’s AGM was Sandra Currie ,the Chief Executive Officer of Kidney Research UK, and she was invited to hand the baton , which contained a letter for Prof.Tim Goodship , the then Chair of Kidney Research UK , to member Kimberly, who was to be the first fundraiser on the journey.
The following week on 28th February ,Rare Disease Day 2015, Kimberly who did not live far from Illand , a very small village, walked over the weekend from there with friends and family to her hospital in Exeter, Devon. They not only raised several thousands of pounds for research but also created a lot of awareness about aHUS through publicity about their walk.
Kimberly and Dr Corelli Bingham passing the test tube baton at the end of the walk
And so it went on through Devon, with aHUS patients there who were related through a common ancestor from several centuries ago. There are far more aHUS patients in Devon than there should be.
Although not living in Devon myself I was one of those relatives. So I chose to walk the 13 mile route from the village of Burrington via South Molton to North Molton ( having driven over 200 miles to get there!) . All places which my aHUS ancestors had lived and farmed. Very little had changed in this very rural part of UK so I walked along lanes where my ancestors had their houses and walked themselves.
The oak tree in the centre of Burrington village
Starting off from the Burrington Oak , a tree believed to be over 300 years old, which was a mere sampling when my ancestors walked by it, I was joined by my daughters and we raised nearly a thousand pounds for research.
And onward the journey went. Although there would be some discontinuity in the route as aHUS patients joined in the journey north and eastward, some imagination was deployed in choosing what would follow at each subsequent fundraising stage.
A family cycled from their hospital in Bristol to the English side of the long suspension bridge crossing the very wide estuary of the River Severn. A Welsh Patient then took the baton and walked across the bridge into Wales.
The next stage was a 87 mile long distance walk over a weekend along a prehistoric footpath “The Ridgeway” through South Central England. For aHUSUK member Mathew and friends it was a stag weekend before his wedding. No doubt creating a lot of thirst to be quenched as well as raising thousands for research.
The stage through London was even more bizarre. Member Sylwia made it a virtual walk by actually walking up through the foothills of the Himalyas to the iconic base camp 2 beneath the peak of Mount Everest . She took the test tube baton with her for a photograph. She pointed the baton towards the top of Everest but with the camera angle it turned out to be pointing towards another mountain peak next to Everest . That other peak has been renamed Mount aHUS!
Some members raised funds with static events like BBQs , coffee mornings and tea parties. Trustee Christine in Scotland cycled hundreds of miles in North East Scotland . Another volunteer walked through the Yorkshire Dales. The virtual miles by someone who ran the Great North Half Marathon, brought the journey to the Angel of North a famous sculpture by Anthony Gormley.
The final stages of the Journey for Life was from the Angel down to the River Tyne The walkers were joined by dozens more when they arrived at the river. The walk then continued back and forth five bridge * crossings over the river, including the famous Tyne Bridge. a scaled down version of the Sydney Harbour Bridge, which had been made in Newcastle upon Tyne.
“Ganning alang the Scotswood Road“in the local Geordie dialect i.e. going along the Scotswood Road, the fundraisers entered the Centre for Life and the baton was finally handed over to Prof Goodship. Refreshments were well earned and deserved and nearly £30,000 overall had been raised for research since the baton had left Illand on Rare Disease Day .( in time that would increase to £60000 as more donations came in).
It was the 20th September 2015 , exactly 60 years to the day that the term “HUS” appeared in public for the first time , coined as it was by Conrad Von Gasser. Since 1955 it has been quite a journey for life for all aHUS patients too.
aHUSUK and its members had once again done something extraordinary ,and collectively had certainly given something back.
* The featured image captures four of the five bridges crossed taken from the Millenium pedestrian swing bridge near to the start of the final part of the walk.
* The Tyne Bridges Walk continues to be part of Kidney Research UK’s annual programme of fundraising events and has grown in numbers participating raising funds for all kidney research.