For individuals and families living with epidermolysis bullosa (EB), a cure would mean more moments of comfort, connection, and possibility.
At Walter Clark Legal Group, we’re honored to support EB Research Partnership and invite you to help us raise $5,000 by the end of EB Awareness Week to advance research toward treatments and a cure.
Every gift, no matter the size, is an act of care. Thank you for being part of this effort and for helping families look toward a brighter future.
Epidermolysis Bullosa (EB) is a devastating and life-threatening genetic skin disorder that affects children from birth. Individuals with EB lack critical proteins that bind the skin's two layers together, causing the skin to tear apart, blister, and shear off, leading to severe pain, disfigurement, and internal and external wounds that may never heal. The majority battling EB are children, as many don’t live long into adulthood.
Children with EB are often called “Butterfly Children” because their skin is as fragile as the wings of a butterfly. With skin this fragile, everyday activities like eating, sleeping, walking and playing can become monumental tasks. Today, there are no cures for individuals battling EB, however, EB Research Partnership (EBRP) is dedicated to changing that.
Founded in 2010 by a group of dedicated parents, Jill Vedder, and Eddie Vedder of Pearl Jam, EB Research Partnership (EBRP) is the largest nonprofit funding research aimed at finding a cure for Epidermolysis Bullosa (EB).
Over the last decade, EBRP has made remarkable strides, including raising +$80M for life-saving research, contributing to a 25x growth in EB clinical trials, helping to fund the first-ever FDA approved topical gene therapy and treatment for EB families.
EBRP ensures sustainable funding for future EB research through an innovative Venture Philanthropy Model. Instead of simply making grants, EBRP searches the globe to strengthen and accelerate the most promising research projects. These projects are vetted through EBRP’s world-class Scientific Advisory Board. In exchange for funding, EBRP takes a financial interest in the work of research institutions. When those projects succeed, the returns are reinvested back into other promising EB research initiatives that are also scalable across thousands of other rare diseases.
Every dollar invested at EBRP is multiplied — potentially many times over.