Cynthia Rodriguez via Crowdrise
September 23, 2012
I am running my very first 5K for my son, Oxlee. As many of you know, I'm not a runner, I'm simply not designed to run. I will do this. I will train and I will finish. I ask for your support and prayers, they are both greatly needed and appreciated.
As many of you are aware, EB is a rough and life-altering skin disorder and there currently is no cure. For those of you who may be unfamiiliar with Epidermolysis Bullosa, educate yourself.
I am running because I can. I am running because Oxlee can't.
JACKSON GABRIEL SILVER FOUNDATION INC wrote -
About 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. JGSF funds scientific research with the goal of treating and curing this devastating disease. To date, JGSF and affiliated funds have directly raised over $850,000 and have been instrumental in securing over $28 million for EB research. JGSF has given grants to support the promising therapies at leading institutions including Stanford University, the University of Minnesota, the University of Southern California and others. Please visit www.jgsf.org to learn more.
About Epidermolysis Bullosa (EB):
EB is a debilitating and devastating genetic disorder that affects a child from birth. EB is extremely rare - a child has 1 in 50,000 chance of being born with EB - and EB is not specific to any ethnicity or gender.
EB is technically defined as a group of diseases characterized by blister formation after minor trauma to the skin. Practically speaking, a child who suffers from EB lacks a critical protein that binds his or her layers of skin together. This protein acts as the “velcro” that attaches one layer of his or her skin to the other. Without this “velcro,” when this child moves, his or her skin slides apart, blisters and shears off leading to severe pain, disfigurement, and in too many cases, a premature death. A child with a severe form of EB can have a 60% cumulative 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.