Nathan Slovatizki wrote -
I recently watched an episode of the Doctors about John Hudson Dilgen, an 11-year old boy living with epidermolysis bullosa, a rare, terminal skin disease. Watching John suffer deeply saddened me and as soon as the episode was over I knew I needed to help. On June 1 2014 I will be running the Rock n Roll Marathon in San Diego Ca. When I first started my training for this marathon my goal was simply to get in better shape and challenge myself with running the 26.2 mile distance in a better time than my last marathon . I was doing it for personal reasons. Now I would like to complete this run for John. I want to help bring awareness about this disease and help find a cure. Please help John and other children living with EB by donating to the Jackson Gabriel Silver foundation.
The Jackson Gabriel Silver Foundation is a nonprofit organization founded by Alex and Jamie Silver, whose son Jackson was born with Epidermolysis Bullosa ("EB"), a devastating, painful, disfiguring and currently incurable blistering disorder that affects children from birth. The foundation funds scientific research with the goal of curing and treating this devastating disease.
Practically speaking, an individual who suffers from EB lacks a critical protein that binds his or her layers of skin together. Imagine your skin being as fragile as a butterfly's wings. Imagine every movement you make causing your skin to shear off your body.
Curing a rare disease is always a race against the clock. But curing EB is a race against a clock moving at warp speed. Children with severe forms of 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 his or her shortened life.
But, there is good news . . . There is tremendously encouraging work underway, and a cure for EB could be within our grasp. The Jackson Gabriel Silver Foundation has already funded key research projects and is excited to collaborate with the brilliant scientists working on a cure for EB.
The more funds we can raise, the more research we can fund and the more lives we can save. Within the foreseeable future, and even sooner with your support, children with EB can grow up to live full and pain-free lives.