Imagine your skin being as fragile as a butterfly's wings. Imagine every movement you make causing skin to shear off your body. This is what life is like for children with Epidermolysis Bullosa ("EB"), a devastating, painful, disfiguring and currently incurable blistering disorder that affects children from birth. It is the worst disease you've probably never heard of. Practically speaking, a child who suffers from EB lacks a critical protein that binds his or her layers of skin together. Children with EB have a 60% risk of dying by age 15, and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of their shortened life.
A nephew of some close friends of mine named John Hudson Dilgen suffers from EB. John is a great, strong and brave kid who fights this disease every day. Please watch this short video about John Hudson and what he faces on a daily basis:
On October 4, I will be running the 2014 The Twilight Zone Tower of Terror™ 5K in John Hudson's name to support the Jackson Gabriel Silver Foundation (JGSF), a nonprofit organization that funds scientific research with the goal of treating and curing EB.
Please consider making a donation to help me reach my fundraising goal of $1,000. Every dollar brings us a step closer to finding a cure for this horrible disease. You can help support kids like John Hudson and Team JGSF by going to http://www.crowdrise.com/fundraiser/edit/towerofterror10miler/brianmcintyre
Thank you so much for supporting John Hudson Dilgen and the work that the JGSF is doing to find a cure for EB.