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Pseudoxanthoma elasticum, PXE, is an inherited disorder that causes select elastic tissue in the body to become mineralised, that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system and gastrointestinal system. PXE was recognised over a hundred years ago. It affects approximately 1/25,000 people making it a rare genetic disorder.
Our eldest son was diagnosed with PXE in the summer of 2013 and since then we've been wondering what we can do to help find ways of combatting the various illnesses related to the disease. So, in addition to the dietary and healthy lifestyle that we have to impose on our son, I thought it would only be the right thing to push myself, (and maybe some others), to enter into various physical challenges to help raise awareness and money to help international research into PXE.
Last year I entered into various triathlons, runs, bike rides and obstacle courses to raise funds and we also held an 80's party. In total we raised £2300 for PXE International who commission research into PXE and who are an amazingly supportive organisation.
So, this year we'd like to continue and raise some more much needed funds. I'm entering in to "Man vs Mountain", which is going to be my biggest challenge to date!
Man vs Mountain will pit you against mother nature in all her glory. You’ll face the weather, natural gradients, and the mental challenge of knowing that you have to run 20 miles over a mountain. You’ll begin your journey at sea level from within the UNESCO World Heritage listed Caernarfon Castle before climbing steadily through the beautiful landscapes of Northern Wales. This is a battle against the land, with some Rat-made obstacles thrown in for good measure. Once you’ve braved the elements and descended from the summit of Snowdon, you’ll then face the ‘All Out Vertical Kilometre’, a guided abseil, and a series of land and water based obstacles designed to test what strength remains. This is not a race for the faint-hearted. You’ll do battle with the mountain over a gruelling 20 mile journey to see if you can emerge victorious. www.ratracemanvsmountain.com
It would be amazing if you could help support this challenge, it would mean so much to us and the wider PXE community. Rare diseases do get missed yet, for the families and individuals they affect, are just as important, if not more so, than the more well known ones.
Please do contact me if you would like more information about PXE but please feel free to visit the PXE International website: www.pxe.org as they are the experts. Even better, you could donate to my fundraising page, that would be brilliant.
Thanks for taking the time to visit.
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Al Ditheridge - Man vs Mountain PXE challenge Community
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