BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 03, 2013
And this is what my fundraising page says:
I'm giving it another go and on November 3rd, I will be running the NYC Marathon to support the Jackson Gabriel Silver Foundation (JGSF). For those of you who contributed last year, despite the cancellation of the NYC Marathon, your donation was greatly appreciated. So let's do it again for this great cause.
The Jackson Gabriel Silver Foundation is a nonprofit organization founded with the mission to treat, cure, and end Epidermolysis Bullosa ("EB"). The organization was founded by Alex and Jamie Silver whose son, Jackson, has EB. EB is a devastating and life-threatening skin condition that affects children from birth. Children with EB lack a critical protein that binds the layers of skin together. Without this protein, skin tears apart, blisters, and shears off, leading to severe pain, disfigurement and wounds that never heal. 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.
We've watched Jackson grow since we first met the Silvers several years ago and he was a pre-school classmate of our eldest daughter, Amelia. He is an incredible kid with a curiosity and intellect that far surpasses his few years. More significantly, he is an incredibly strong young boy who handles EB with a strength and bravery that few could ever know.
Please support Jackson and other children like him by donating. I thank you for your support and I know Jackson and the Silvers do to!