I am honored to be running my first marathon in the 2013 NYC marathon with the Jackson Gabriel Silver Foundation (TEAM JGSF), raising money to find a cure for Epidermolysis Bullosa (EB) a devastating and life-threatening skin disease that affects children from birth. For a child with EB, the slightest touch can cause their skin to blister and tear apart. 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.
I learned of EB from my good friend who has known Jackson Gabriel Silver and his family since he was five months old and has since been passionate to help find a cure for one of the worst diseases you've never heard of before now. My friend describes Jackson as a bright and wonderful child who has a thirst for knowledge from here to the moon. Unfortunately, he has also become accustomed to pain. No child should have to live with this constant pain.
There is tremendously encouraging work underway, and a cure for EB is within reach. JGSF is aggressively funding research. In the past 3 years, JGSF has raised over $1.5 million for disease research and is helping to fund the promising work taking place at leading institutions such as Stanford and the University of Minnesota.
Please consider making a donation to help me reach my fundraising goal of $2,500 and help children diagnosed with EB live long and pain-free lives!!
For more information about EB, go to http://www.jgsf.org/.
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