On March 18th, I will be running the NYC Half Marathon to support the Jackson Gabriel Silver Foundation (JGSF), a nonprofit organization that is very dear to me. It was founded by my friends Alex and Jamie Silver, whose son, like Zach and Tommy, 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, not only for Zach and Tommy's sake, but for the thousands of other children and families coping with EB.
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 Zach 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 JGSF has already funded key research projects and is excited to collaborate with the brilliant scientists working on a cure for EB. Visit www.jgsf.org to learn more about this organization.
Please consider making a donation to help me reach my fundraising goal of $1500. Every dollar brings us a step closer to finding a cure for this horrible disease.
Thank you!! Terasha Johnson