EB Research Partnership wrote -
On July 15, 2016 our granddaughter Elodie was born with Dystrophic Epidermolysis Bullosa (“EB”), a rare genetic skin condition, which is caused by a lack of collagen, the protein that holds skin together. EB Research Partnership (“EBRP”) provided lots of support to Elodie’s parents and family during the early anxious days and weeks. As we learned about EB and the great research underway and supported by EBRP, we resolved to do what we can for Elodie and all EB babies by supporting the life-changing research to cure and mitigate EB. Elodie’s mom, two aunts and an uncle are running half-marathons to raise funds for EBRP this year, but, since my marathon days are over, I have been searching for a suitably challenging task to symbolize the effort to cure EB.
The El Camino de Santiago de Compostela is an ancient pilgrimage across northern Spain, believed to be the route Saint James followed to spread the Gospel in the Iberian peninsula. Concluding in Santiago de Compostela, the trail is 500 miles. I’ll be walking 100+ miles in about a week, an arduous task, but to me it symbolizes the inspired work of the medical researchers, the loving prayers and struggles of the families with EB, and the heartening spirit of generous sacrifices made by those whose prayers and donations accomplish so much.
ABOUT EB RESEARCH PARTNERSHIP (EBRP):
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.
Thank you for your material and spiritual support!