Tracy Katz via Crowdrise
October 07, 2011
BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT: NYC Half 2012
EVENT DATE: Mar 18, 2012
Dear Friends and Family,
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 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, not only for Jackson’s sake but for the thousands of other children and families coping with EB.
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. This year alone, the Jackson Gabriel Silver Foundation has awarded $175,000 in research grants. Visit www.jgsf.orgto learn more about this organization.
Please consider making a donation to help me reach my fundraising goal of $2,000. 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.