END EB. FIND A CURE. On November 4th, I will be running in the NYC Marathon (yup, all 26.2 miles) to support the Jackson Gabriel Silver Foundation and help find a cure for Epidermolysis Bullosa (“EB”). This will be my first marathon and running as a part of the JGSF team makes it all the more meaningful. JGSF was founded by my friends Alex and Jamie Silver, whose son Jackson - one of Izzy's first friends - was born with 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, an individual 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 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.
But, there is good news . . . There is tremendously encouraging work underway, and a cure for EB could be within our grasp. 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.
The more funds we can raise, the more research we can fund and the more lives we can save. Within the foreseeable future, and even sooner with your support, children with EB can grow up to live full and pain-free lives.
Seeing first-hand what a remarkable little guy Jackson is has heighted my awareness of this devastating disease and the critical need to find a cure.
CR Impact Points
Click the VOTE button to give Scott 100 CrowdRise Impact Points (CIPs). Vote for the Volunteers and Fundraisers that are answering the call to service, raising money for charity, and making an impact for their causes. Come back and Vote every months. CIPs can earn you the highly coveted, highly respected CrowdRise Royalty Status.
CR Impact Points
If you're seeing the grey VOTE button, you should feel great about yourself. It means you already voted for Scott this month. Come back next month and vote again if you still love Scott. Thanks to your vote, Scott earned 100 CrowdRise Impact Points (CIPs). CIPs can earn you the highly coveted, highly respected CrowdRise Royalty Status.