Mary Alice Venezio Sexton via Crowdrise
October 01, 2014
Thee days from today, On October 4, I will be running the 2014 The Twilight Zone Tower of Terror™ 10-Miler to support the Jackson Gabriel Silver Foundation (JGSF). You should know that I am not a marathon runner. In fact, I only began running a few years ago and to date have only completed a few 5K's and one 5 miler that was a challenge! Why commit to a 10-Miler? I am running to support a boy, John Hudson Dilgen - a boy who was introduced to me by a friend. I watched the video from The Doctor's and I could not sleep. I want so much to help this boy and others with this disease. When the 10-Miler became an option, I realized that maybe I could make a difference. I am running to raise money to find a cure for Epidermolysis Bullosa ("EB") to help John Hudson Dilgen and all other children born and suffering with this disease. Please click on the video or this link to learn more about John Hudson Dilgen and this disease.
JGSF was 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 has raised over $2,000,000 for research and given grants to support the promising therapies being developed at Stanford University, the University of Minnesota and the University of Southern California.
Practically speaking, a child 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 like Jackson 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 shortened life.
There is tremendously encouraging work underway, and a cure for EB is within reach. 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. Go to www.jgsf.org to learn more.
Please consider making a donation to help me reach my fundraising goal of $500. Every dollar brings us a step closer to finding a cure for this horrible disease.
~~Thank you so much for supporting me and the work that the JGSF is doing to find a cure for EB.