BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Nov 01, 2015
Early this year I made my new year's resolution to compete in an event each month. I have enjoyed participating in every race every, benefitting a variety of different causes. Then a friend posted a heartbreaking and inspiring video on facebook of a young boy suffering with terrible skin disorder, Epidermolysis Belosa. What many of you don't know is that my husband has the symplex version of this disorder. A protein missing in his DNA means the skin layers in his hands and feet are fragile, like the wings of a butterfly. Any heat or friction causes pain and blisters.......thus his LOVE for the water! This affects our daily lives in ways people do not see. If it is hot out, things as simple as walking our dogs a few blocks to the coffee shop in the morning are not possible without returning home to pain and blisters that last for days. This disorder is genetic and is passed down through the family. Mark's sister and father also have EB. While those with the simplex version live complete lives, the distrophic version, which affects all surfaces of the body result shortened life expectancy
EB RESEARCH PARTNERSHIP
We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.
We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
Partner with us in our mission to further life-saving research.