Such a horrible and sad disease. I was introduced to it through (surprisingly) a Jeep club affiliated charity in the United States called Crawling for Reid. A few thousand off-road enthusiasts get together in South Pittsburg, TN to have a good time and raise funds for a small child with this unfortunate affliction. $120,000 USD was raised last year with record attendance and this year is set to raise even more. In particular, as I understand it, this charity benefits the little boy (Reid), primarily, as well as ongoing research. If you feel so inclined to donate, you may do so here http://crawlingforreid.com/donate/.