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We both already volunteer with XP support group helping to run the annual camp for XP sufferers. The camp is an opportunity for suffers to meet other families, have consultations with doctors and feel like part of a community. Due to the rarity of the condition they would not usually have an opportunity to meet other XP families which can be very isolating. You can see more about XP and Owl Patrol at xpsupportgroup.org.uk
However... we now have a new challenge! In 2020 the Canadian XP group are hosting an international conference, where the finest doctors from around the world will be present to give talks and meet with sufferers. We would really like to be able to help our UK families attend! This is a once in a lifetime opportunity as some of our XP sufferers would not otherwise be able to go, as travelling with XP can be difficult and costly.
Neither of us are hugely fit! and prefer a light stroll around Black Park lake, but we are lacing up our walking boots and attempting (with the help of a guide) the 1,345M climb, over treacherous terrain to the peak of Ben Nevis. We are starting our journey on the 8th August this year and building up to Ben on the 10th. Our first practice walk (two boots difficulty rating) will be through Stell falls and Mevis Gorge, this will be followed by The North face of Nevis and the Allt a'Mhuillin on the 9th (three boots difficulty rating) and finally the four boot difficulty rated Ben Nevis Climb!!!
Any support will be hugely appreciated even if it is just a little towards our goal :) Any donation of blister plasters would not go amiss either!
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