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Raising funds for the Crohn’s MAP Vaccine test – The best hope of a cure for Crohn’s Disease so far

The Beginning

In 2014 I unfortunately learnt a lot about Inflammatory Bowel Disease, which kicked off a chain of events which has lead to my desire to do something to help and the creation of this site. In the Autumn of 2014 my son became ill and after numerous visit to doctors and specialists and with much poking, prodding and testing by the Christmas he was diagnosed with Crohn’s Disease.
Crohn’s is a horrible, life-long, disease affecting over 100,000 people in the UK and 10 times that across the globe. It results in ulceration of the digestive tract, causing diarrhoea, abdominal pain and fatigue, leading to time off college or work, hospital visits, medication with side effects and in many cases surgery. The current treatment of Crohn’s requires taking immunosuppressant drugs and long periods of taking steriods when it flares up, both which have dubious side effects. Now though, there is exiting research which shows that a pathogenic bacterium, Mycobacterium Avium subspecies Paratuberculosis or MAP for short, is thought to be the cause of Crohn’s Disease. The MAP bacterium is very hard to treat and until recently has been very hard to test for, however Professor John Hermon-Taylor of Kings College London has developed a new vaccine against MAP which is both curative and preventative – offering hope to millions of Crohn’s sufferers worldwide. The anti-MAP vaccine is now being developed by HAV Vaccines (along with Oxford University’s Jenner Institute) and is in the process of Human trials now.
Professor Human-Taylor’s team is also developing a companion MAP blood test which will be far more accurate than the current method. It is the development of this MAP blood test that I am fundraising for.

The Challenges

I have been paddling for about 12 years now and during that time have been lucky enough to kayak on the rivers of the Southwest of England, Wales, Cumbria and the Massif Central in France, as well as the surf kayaking in Somerset, Devon, Cornwall and west France. In that time I have organised a local river race, the Blaze the Barle for the last 10 years and have been entered a couple of surf kayak events. In 2015 half of the money raised in the Blaze the Barle went to the Crohn’s MAP Vaccine cause, in the following two years I managed to raise £3,000 by challenging myself through sea kayaking events.
When I first took up sea kayaking I thought how hard could it be, but after my first two training sessions when I had my boat bashed from underneath me by a surging sea and was then blown over by a side gust of wind I had a greater level of respect for the sea and sea kayakers. I am challenging myself to learn the specific skills of sea kayaking, going from relative novice to competent amateur(!) in as short a time as possible. I then plan to complete a few different and difficult sea kayaking trips to test myself against my skills, courage and knowledge.
The challenges I undertook between 2016 – 2018 were:
  • Circumnavigation – Isle of Wight (around the island in 16 hours)
  • An open water crossing – Steep and Flat Holms, in the midle of the Bristol Channel
  • An expedition – Cornwall to Watchet, 4-days, self-supported and solo.
I accomplished these goals and raised about £3,00 in the process. Now, in 2020, I plan to start again, with another set of challenges – a River Race on the Axe, an open Crossing to Lundy (solo) and a bigger and better challenge to really raise the fundraising roof – yet to be confirmed!

How did I get there

These challenges were not easy, they were well outside my comfort zone as a kayaker that I was then. Each challenge had it’s own particular danger and difficulties and each needed a lot of training and preparation on my part, however I was determined to succeed. I told myself, my son and all the other thousands of CD sufferers have had to put up with far more than this, with the shocking realisation that they have a life-long, debilitating disease, with no end in sight for their treatment, for me it’s easy, I only need to train, get fitter, gain some new skills and take some controlled risks!
So how did I get there – I got fitter, I had a little shoulder strain (a hang-over from summer surfing!) which was under treatment and strengthening from my physiotherapist, Marcus Bill. I had a nice new (to me) sea kayak, which I was learning to use and I had some invaluable help from coaches and friends Joanne Sidwell and Darren Sherwood and I learnt a whole new set of kayaking skills. With practice I was undertaking more sea kayaking trips, with friends and solo, pushing my boundaries in preparation for the challenges to come.

I need your help

The reason I am doing this is to raise funds the the work that Professor Herman-Taylor is doing at Kings College London to develop the MAP blood test and bring it to general release. I will be releasing more information on the progress of my training and the details of my fundraising events and trips as they develop. In the mean time I have a JustGiving page where donations can be sent, see below for the address. All moneys received will go direct to the specific pot of money, at Kings College London, for the work to develop the MAP blood test, with nothing creamed off to deal with admin, wages etc, unlike most other charities.
Thank you for reading and see my Blog page for more up-to-date info or the other pages for related information.