We are a husband an wife team, based in Derby who had some devastating news in 2013. So, we decided to set up a charitable organasation to help a charity called PXE International, and here's why...
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.
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 recognized over a hundred years ago. A number of significant advances have been made in the past few years.
Here’s what we’re doing about it
We are now entering our FORTH year of fundraising and what a journey it's been! We've managed to raise in excess of £8000 all of which has gone toward funding research and a Centre of Excellence for PXE. We need to continue and support the amazing research being done by PXE International to help tame this life changing disease not only for our son but for all those who live with PXE.
You can join us
Please help by supporting us this year. We have many challenges planned as individuals and teams. Some will be fun and some will be a down right struggle to complete but nothing compared to the lifelong challenge of having PXE. Jo is our fundraising party and social events oganiser, her plan is to create public events, parties and lots of fun stuff people can come along to and enjoy. We have some great ideas for 2018, and beyond, so make sure you follow us on here and on social media to keep up to date with our calendar of events.nges in the skin, eyes, cardiovascular system and gastrointestinal system. PXE was recognised over a hundred years ago. It affects approximately 1/50,000 people making it a rare genetic disorder.
