"Last week on Thursday, March 10, 2016, Belle was diagnosed with an extremely rare genetic disease called Niemann-Pick Type C-1 Disease (NPC1). Only 500 children have NPC1 in the world and there only 100-150 diagnosed cases in the United States. The average life-span of children who go untreated is between 12 and 20 years of age. Most children with NPC1 will die in their mid-teens. As you can imagine, when we were told that she had inherited this horrific genetic disease we were heart broken and quite frankly, our worst nightmare was realized. We want to save our daughter and we need your help to do so."
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TFC will be supporting this family by hosting "Bootcamps For Belle". We will be hosting a number of camps at various locations! We'd love to have as many of you participate as possible. You will be able to make a donation at one of bootcamps for Belle. Let's come together to help this family give their daughter a chance to live! Please continue to check back here for a list of participating camp locations!
#bootcampsforbelle
CAMP LOCATIONS & TIMES:
CAMP LOCATIONS & TIMES:
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It's amazing that the amount of news that happens in the world every day always just exactly fits the newspaper. See the link below for more info.
ReplyDelete#fits
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