Graham is diagnosed with a rare connective tissue disorder called Epidermolysis Bullosa (EB). There are many variations of EB, but they are all characterized by extremely fragile skin that blisters and tears with minor movements or friction. The type Graham has is one of the more severe kinds, and is called recessive dystrophic Epidermolysis Bullosa (RDEB). His skin lacks collagen, an important protein that helps with strengthening. Children with EB are referred to as butterfly children because as the analogy goes, their skin is as fragile as a butterfly’s wings.
Skin isn’t the only thing affected though. Internal organs and bodily systems are also affected. EB is always painful, often pervasive, and there is currently no cure. We strongly feel this diagnosis was put into our life for a reason. Our family's life mission is to advocate, spread awareness, and raise money for research in hopes of finding a cure. Each day we pray with so much hope in our hearts that our sweet Graham will someday see a life without this debilitating disease.
Join EB Research Partnership on November 18, 2020 at 8pm EST for Venture Into Cures, a first-of-its-kind digital event led by our Co-Founders Jill and Eddie Vedder. The show will feature uplifting stories of individuals with EB and their families along with celebrity friends Adam Sandler, Laura Dern, David Letterman, Judd Apatow, Jimmy Kimmel, Lukas, Micah, and Willie Nelson, Keb' Mo', Luis “King Kong” Ortiz, and many more! Streamed globally by our partner Amazon, Venture Into Cures is packed with noteworthy moments like the debut of a brand new song by Eddie Vedder inspired by EB stories. All proceeds benefit EB Research Partnership. Learn more at www.ventureintocures.org.
EB Research Partnership (EBRP) is the largest global nonprofit funding research to discover treatments and cures for Epidermolysis Bullosa (EB), a devastating and life-threatening genetic skin disorder that affects children from birth. Founded in 2010 by a group of dedicated parents and Jill and Eddie Vedder (Pearl Jam), EBRP has raised $40M and funded 80 EB research projects to date, impacting the clinical landscape with a 15x increase in the number of clinical trials in EB - from only 2 to over 30 today.